FOR IMMEDIATE RELEASE
Media Contact:
Donald Wilson or Sheryl Craig
dwilson@mcraigassociates.com or
secoops@mcraigassociates.com
(310) 899-2900
SAVE THE DATE
RENAL SUPPORT NETWORK HOSTS 13th ANNUAL RENAL TEEN PROM
FOR HUNDREDS WITH KIDNEY DISEASE
SUNDAY, JANUARY 15, 2012
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WHAT: Renal Support Network (RSN) hosts the 13th Annual Renal Teen Prom for hundreds of patients with kidney disease.
The Renal Teen Prom is the inspiration of Lori Hartwell, RSN’s President and Founder, who missed her own prom due to kidney
disease.
More than 300 teens and their guests, ages ranging from 14 to 24-years-old, who are on dialysis, pre-dialysis or
with a transplant, will receive an evening of glamour, fun and excitement. The prom attracts not only Southern California
teens, but teens from across the United States: Washington, Arizona, Texas, Massachusetts, Hawaii, Colorado and New Jersey.
Last year, actor/comedian, Jack Black made a special appearance.
For more information about RSN’s Renal Teen Prom or to receive an invitation, please call 1-(866) 903-1728 or visit
www.RSNHope.org/prom.
WHEN: Sunday, January 15, 2012
WHERE: Notre Dame High School
13645 Riverside Dr.
Sherman Oaks, California
WHO: Renal Support Network is a non-profit, patient-focused, patient-run organization that provides non-medical
services to those affected by chronic kidney disease. RSN strives to motivate and assist patients in developing their
personal coping skills, special talents, and employability by educating and empowering them (and their family members) to
take control of the course and management of their disease. Renal Support Network values people with kidney disease and helps
them become self-sufficient through education, advocacy and hope for a better tomorrow through numerous educational and support
programs including the RSN HOPEline, KidneyTalk and KidneySpeak. For more information, please visit
www.RSNhope.org.
###
FOR IMMEDIATE RELEASE
Media Contact:
Lori Hartwell
Lori@RSNhope.org
(818) 543-0896
NO KIDNEY LEFT BEHIND
A Conversation About A New Bill Introduced in Congress
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GLENDALE, Calif., – November 1, 2011 – Renal Support Networks’ (RSN),
KidneyTalk covers a topic that affects most
people who have or are waiting for a kidney transplant. People who have received a kidney transplant who have Medicare will
lose their Medicare benefits 36 months post-transplant, if they are not disabled or are not over the age of 65. If a
transplant recipient does not have health insurance and/or access to the medications that keep the organ viable, it leaves
them at risk of losing their transplant due to rejection. Congressman Michael C. Burgess, M.D., from Texas, introduced the
Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011 (H.R. 2969) to help transplant
recipients have continued access to the life-saving medication.
Lori Hartwell, RSN Founder and host of KidneyTalk, received a kidney transplant herself in February of this year. She has
lived through the difficulty of losing a transplanted kidney in the past due to health issues and discusses with Congressman
Burgess the unneeded pain and suffering people go through when it happens due to lack of funds to pay the medications.
Congressman Burgess explains why this bill is good policy and a necessity, to save Medicare money and to save patient lives.
The Bill needs support and RSN urges the public to contact their representatives support H.R. 2969.
KidneyTalk can be found on Renal Support Network’s website, www.RSNhope.org and is also available as a free download on iTunes.
About Renal Support Network
Renal Support Network is a nonprofit, patient-focused, patient-run organization that provides non-medical services to
those affected by chronic kidney disease. Renal Support Network strives to motivate and assist patients in developing their
personal coping skills, special talents and employability by educating and empowering them (and their family members) to
take control of the course and management of their disease. Renal Support Network values people with kidney disease and
helps them become self-sufficient through education, advocacy and hope for a better tomorrow through numerous educational
and support programs including the RSN HopeLine, KidneyTalk and
KidneySpeak. For more information, please visit www.RSNhope.org. ###
FOR IMMEDIATE RELEASE
Media Contact:
Donald Wilson or Sheryl Craig
dwilson@mcraigassociates.com or
secoops@mcraigassociates.com
(310) 899-2900
RENAL SUPPORT NETWORK ANNOUNCES NINTH ANNUAL
KIDNEYTIMES ESSAY CONTEST WINNERS
Creative and Inspiring Essays Penned by People Battling Chronic Kidney Disease
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LOS ANGELES, Calif., – September 15, 2011 – “What hobby helps improve your quality of life and helps you forget the many challenges kidney disease presents?” was the theme of Renal Support Network’s (RSN) Ninth Annual KidneyTimes Essay Contest, which had only one qualification for entry – to have been diagnosed with chronic kidney disease.
"We have never received so many creative and inspiring essays as we have this year," said Lori Hartwell, RSN founder and president. "Our judges had a difficult task choosing the best essays. In the end we had to honor more than just the top three essays and we congratulate all of our talented authors.”
Valen Cover from Auburn, California, took this year’s top prize with her essay about hiking entitled, “A Breath of Fresh Air.” “I am extremely honored; this means so much,” responded Cover when Hartwell called her with the good news.
The second place winner, Ellen Sonenthal, from Henderson, Nevada, is a newcomer to the kidney world. Diagnosed in December, 2010, with end-stage renal disease, this is Sonenthal’s first essay contest. Her essay focused on her love of pottery making.
Awards were given for first, second and third place, with five essays chosen for honorable mention.
First Place Winner: Valen Cover, of Auburn, CA
“A Breath of Fresh Air”
Second Place Winner: Ellen Sonenthal of Henderson, NV
“She’s Gone to Pot!”
Third Place Winner: Gary Severson of Everson, WA
“Music Moves Me”
Honorable Mention
Kelly Chuba of Harrisburg, PA
“Let Go and Play”
Jasmine Davis of Houston, TX
“My Life with Clorox”
Keith Matthews of Crowley, LA
“The Odd Ones”
Versie McCullough of Tyler, TX
“For the Love of Cooking”
Mary Wu of Ossining, NY
“The Power of Water”
This year’s winning essays can be viewed at the RSN KidneyTimes health library (kidneytimes.com) or via the RSN website at RSNhope.org. The theme for next year’s RSN KidneyTimes 10th Annual Essay Contest will be “What Small Act of Kindness by a Healthcare Professional Made a Difference?” Look for details at kidneytimes.com.
About Renal Support Network
Renal Support Network (RSN) is a non-profit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease. Renal Support Network strives to motivate and assist patients in developing their personal coping skills, special talents and employability by educating and empowering them (and their family members) to take control of the course and management of their disease. Renal Support Network values people with kidney disease and helps them become self-sufficient through education, advocacy and hope for a better tomorrow through numerous educational and support programs including the RSN HOPEline, KidneyTalk and KidneySpeak. For more information, please visit RSNhope.org.
###
FOR IMMEDIATE RELEASE
Media Contact
Donald Wilson
(dwilson@mcraigassociates.com)
Sheryl Craig (secoops@mcraigassociates.com)
(310) 899-2900
Twitter: @RSNhope
RSNhope.org/poker
JACK BLACK JOINS OTHER CELEBRITIES IN GOING
ALL-IN TO WIN FOR HOPE
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Word document
Renal Support Network and Love Across the Ocean Present No Limit Texas Hold’em Celebrity Poker Tournament Benefiting Kidney Disease Patients and Refugee Families
LOS ANGELES, Calif., – September 13, 2011 – Actor/comedian, Jack Black and a host of celebrities will ‘ante-up’ at the “All-In to Win for Hope” No Limit Texas Hold’em Celebrity Poker Tournament on Saturday, October 29, 2011 at Commerce Casino in Commerce, California benefiting Renal Support Network and Love Across the Ocean charities. The celebrity poker tournament will award cash prizes.
“We are excited to have Jack Black participate in our second annual celebrity poker tournament,” said Dale Wade Davis, event chairman and actor (“Shameless”). “On behalf of our tournament partner, Love Across The Ocean, we look forward to an afternoon full of entertainment and are honored to have Jack help us raise awareness about chronic kidney disease and the importance of organ donation, as well as the plight of refugee families.“ Davis is a kidney transplant recipient from good friend, Phillip Palmer (ABC7 Anchor).
Welcoming many stars from the Los Angeles area, the celebrity poker tournament is a fun-filled day that offers great prizes, a silent auction, raffles, a dinner buffet and a chance to mingle and compete against stars from various genres of the entertainment industry.
“It’s going to be a great event. You get to play with celebrities, win cash and great prizes, all while helping out two great charities. It doesn’t get much better than that,” added Leyna Nguyen, president, Love Across The Ocean and KCAL9 Anchor.
Other celebrities attending but are not limited to include Bart Johnson (“High School Musical”), Dennis Haskins (“Saved by the Bell”), Lauren Mayhew (“Guiding Light”), Rachel Kimsey (“Days of Our Lives”), Matthew Borlenghi (“General Hospital”), Phoebe Price (“Stanley DeBrock”), Joshua Fredric Smith (“The Road to Freedom”) and Michael Muhney (“The Young and the Restless”). Previous celebrity players have included Marc Brown (ABC7 Anchor), Phillip Palmer (ABC7 Anchor), Michael Cudlitz (“Band of Brothers”/”Southland”), Nadia Dawn (“Spring Break ’83”), Scott Elrod (“Men in Trees”), Rob Fukuzaki (ABC7 Sports Anchor), Stephen Furst (“Animal House”), Jackie Johnson (KCBS/KCAL9 Weathercaster), Paula LaBaredas (“Kelsey Grammer Bill Zucker Comedy Hour”), Camryn Manheim (“The Practice”), Christina McLarty (KCBS/KCAL9 Reporter), Alan Mendelson (Emmy-award winning business and consumer reporter) and Joe Reitman (“Legend of Neil”), among others.
|
WHAT: |
Texas Hold’em Celebrity Poker Tournament |
|
WHEN:
|
Saturday, October 29, 2011
- 1:30 pm: Registration
- 3:00 pm: Tournament Begins
|
|
WHERE:
|
Commerce Casino
6131 East Telegraph Road
Commerce, CA 90040
*Must be 21 years+
|
|
HOW:
|
Order tickets at
www.RSNhope.org/poker:
-
Players:
$200 pre-sale; $250 at the door
- Non-Players:
$50 pre-sale; $75 at the door
- Sponsorship table:
$2,500
|
Participants who purchase tickets in advance receive a $50 discount. Rebuys will be available. All tickets include a buffet. Ticket proceeds benefit Renal Support Network and Love Across The Ocean and are tax deductible.
Jack Black is one of Hollywood’s most memorable actor/comedians. He is best known for his work in “School of Rock,” “Kung Fu Panda” and “High Fidelity” as well as being a favorite nominee at the Nickelodeon Kids Choice Awards and MTV Movie Awards. For the past few years, Black has been special guest at RSN’s Renal Teen Prom, a high school-inspired prom/dance designed for teenagers who missed their own prom due to kidney disease or prolonged absences due to health issues.
Renal Support Network (RSN) is a non-profit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease. Renal Support Network strives to motivate and assist patients in developing their personal coping skills, special talents and employability by educating and empowering them (and their family members) to take control of the course and management of their disease. Renal Support Network values people with kidney disease and helps them become self-sufficient through education, advocacy and hope for a better tomorrow through numerous educational and support programs including the RSN HOPEline, KidneyTalk and KidneySpeak. For more information, please visit
RSNhope.org.
Love Across the Ocean is a non-profit organization led by Leyna Nguyen (KCAL Channel 9 Anchor) helping refugee families of all nationalities start a new life. Through construction and renovation of schools, scholarships, distribution of daily needs such as food, clothing and medicines, as well as assisting families to become self-sufficient, Love Across the Ocean was founded on the purpose to bring change to the lives of children who struggle daily. Leyna was born in Dong Ha, Vietnam and immigrated to America with her family in 1975. She grew up in Minnesota, and was forever changed by a trip back to Vietnam. For more information, please visit
loveacrosstheocean.org.
###
FOR IMMEDIATE RELEASE
Media Contact:
Donald Wilson or Sheryl Craig
dwilson@mcraigassociates.com or
secoops@mcraigassociates.com
(310) 899-2900
Las Vegas Kidney Educational Meeting Enjoys Success
Renal Support Network Educates Patients to be Their Own Advocates Via Regional Patient Lifestyle Meetings
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 Glendale, CA (July 14, 2011) – Renal Support Network (RSN) enjoyed an amazingly successful Kidney Patient Lifestyle Meeting in Las Vegas, Nevada on Sunday, July 10, 2011. Over 100 patients and their caregivers from the greater Las Vegas area and from as far away as California attended the educational meeting held at the California Hotel and Resort in downtown Las Vegas.
“I really enjoyed myself,” commented Robert Ziegler who was diagnosed with kidney disease in 2005 and spent 18 months on dialysis before receiving a kidney from his son in 2007. “Connecting with fellow kidney patients is the best part of the meeting. Many of us are going to be Facebook friends now and learn from each other’s experiences.”
Thanks to gracious sponsors of RSN’s Patient Lifestyle Meeting program, Fresenius Medical Care and NxStage Medical, RSN is able to offer high quality, informational presentations. People with kidney disease, including pre-dialysis, dialysis, and kidney transplant patients, along with a guest are welcomed at no cost as a result of the generous grants.
 “I am glad RSN can provide a program that melds education, the patient experiences and most of all hope for a better tomorrow.” says Lori Hartwell Founder and President.
RSN will be holding its next kidney Patient Lifestyle Meeting in Mason City, Iowa on Sunday, August 28, 2011. For more information on RSN’s future Patient Lifestyle Meetings and its other programs please visit
www.RSNhope.org.
About Renal Support Network
Renal Support Network is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease. RSN strives to motivate and assist patients in developing their personal coping skills, special talents, and employability by educating and empowering them (and their family members) to take control of the course and management of their disease. Renal Support Network values people with kidney disease and helps them become self-sufficient through education, advocacy, and hope for a better tomorrow.
###
FOR IMMEDIATE RELEASE
Media Contact:
Donald Wilson or Sheryl Craig
dwilson@mcraigassociates.com or
secoops@mcraigassociates.com
(310) 899-2900
SAVE THE DATE: All In To Win Poker Tournament Set for October 29, 2011
Celebrities Unite to Play their Cards to Support RENAL SUPPORT NETWORK (RSN) and LOVE ACROSS THE OCEAN
Download Word document
|
WHAT: |
Texas Hold’em Celebrity Charity Poker Tournament benefiting:
Renal Support Network and Love Across the Ocean
(celebrity players to be announced).
|
|
WHEN:
|
Saturday, October 29, 2011 |
|
WHERE:
|
Commerce Casino
6131 East Telegraph Road
Commerce, CA 90040
|
|
HOW:
|
Order tickets at www.RSNhope.org/poker: *Must be 21 years+
- $225 for players*
- $50 for non-players*
|
|
WHO:
|
Renal Support Network
is a non-profit, patient-focused, patient-run organization that provides non-medical services to those affected by
chronic kidney disease. RSN strives to motivate and assist patients in developing their personal coping skills,
special talents, and employability by educating and empowering them (and their family members) to take control of
the course and management of their disease. Renal Support Network values people with kidney disease and helps them
become self-sufficient through education, advocacy and hope for a better tomorrow through numerous educational and
support programs including the RSN HOPEline, KidneyTalk and KidneySpeak. For more information, please visit
www.RSNhope.org.
Love Across the Ocean is a non-profit organization run by Leyna Nguyen (KCAL Channel 9 News anchor) helping refugee
families of all nationalities start a new life. Through construction and renovation of schools, scholarships,
distribution of daily needs such as food, clothing and medicines, as well as assisting families to become
self-sufficient, Love Across the Ocean was founded on the purpose to bring change to the lives of children who
struggle daily. Leyna was born in Dong Ha, Vietnam and immigrated to America with her family in 1975. She grew up
in Minnesota, and was forever changed by a trip back to Vietnam. For more information, please visit
www.loveacrosstheocean.org.
|
#
# #
Media Contact:
Donald Wilson or Sheryl Craig
dwilson@mcraigassociates.com or
secoops@mcraigassociates.com
(310) 899-2900
RENAL SUPPORT NETWORK CELEBRATES FIVE YEARS OF AIRING ONLINE RADIO SHOW,
KIDNEYTALK
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GLENDALE, Calif. JUNE 6, 2011 - On June 6, Renal Support Network (RSN) will celebrate the fifth anniversary of its online
radio show, KidneyTalk. This half-hour program features discussions by special guests about various health and lifestyle
topics affecting the kidney community. To commemorate its increasingly popularity, RSN will be highlighting favorite episodes
from the show’s history each weekday in June. Best-selling author, Jodi Picoult (My Sister’s Keeper) was
KidneyTalk’s first
guest on the premiere episode five years ago. Since then, the show’s host, Lori Hartwell and guest host and actor, Stephen
Furst (Animal House) have interviewed many patients, healthcare professionals, family members and celebrities about kidney
disease and chronic illness.
“As a patient, I felt the kidney community needed an alternative way to learn about chronic kidney disease,” says Lori
Hartwell, president and founder of Renal Support Network. “I wanted to make
KidneyTalk fun and humorous as well as educational.”
Renal Support Network has produced more than 130 episodes of KidneyTalk since its inception. A broad range of topics have been
featured including an interview with comedian Howie Mandel (Deal or No Deal) who talked about using humor when dealing with an
illness, as well as discussing how and when to tell a date about having kidney disease.
High blood pressure and diabetes are the leading cause of kidney failure. According to the Centers for Disease Control,
one in six individuals is at risk for kidney disease. Nearly 100,000 people are waiting for a kidney transplant and 500,000
people are on dialysis. A simple blood test will help determine the presence of kidney disease. Catching this disease in its
early stages can prevent or delay further progression.
KidneyTalk can be found on Renal Support Network’s website, www.RSNhope.org and is also available as a free download on
iTunes. KidneyTalk is made possible through the generous support of several sponsors including Abbott and Fresenius Medical
Care.
About Renal Support Network
Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization that provides non-medical services to
those affected by chronic kidney disease. Renal Support Network strives to motivate and assist patients in developing their
personal coping skills, special talents and employability by educating and empowering them (and their family members) to take
control of the course and management of their disease. Renal Support Network values people with kidney disease and helps them
become self-sufficient through education, advocacy and hope for a better tomorrow through numerous educational and support
programs including the RSN HOPEline, KidneyTalk and KidneySpeak. For more information, please visit
www.RSNhope.org.
######
Announcing the 2011 Annual RSN KidneyTimes Essay Contest Theme:
“What hobby helps improve your quality of life and helps you forget the many challenges kidney
disease presents?”
Download Word document
Glendale, CA (May 13, 2011) – The 9th Annual KidneyTimes Essay Contest, sponsored by Renal Support Network, has announced the
2011 theme, “What hobby helps improve your quality of life and helps you forget the many challenges kidney disease presents?”
There are cash prizes of $500, $300, and $100 for the top three entries and an additional $100 cash prize for the best Spanish
essay. All winners will be featured on the front page of KidneyTimes.com and featured in RSN’s publication
Live & Give.
All people who have been diagnosed with chronic kidney disease and who love to write are encouraged to enter. Entries must be
received by August 1, 2011. Entrants must include their complete name, address, phone number, email and/or fax. Prospective
entrants must visit
www.KidneyTimes.com or
www.RSNhope.org for more information and contest rules.
Essays will be judged by an expert panel of writers and kidney patients for appropriateness to the theme, originality of
idea, creativity, and technical expertise.
“There is a huge, untapped reservoir of literary talent among those with kidney disease. People who live successfully with
an illness have an innovative perspective that goes beyond the mundane. This fresh insight can bring a joyful laugh, a
grateful tear, or food for thought as the reader comprehends the overwhelming challenges that the chronically ill face
every day. If it is true that we all have a book in us waiting to be born, then there should be a substantial library among
kidney patients awaiting its Grand Opening.” says Lori Hartwell, President and Founder of RSN and author of
Chronically
Happy: Joyful Living In Spite of Chronic Illness.
About Renal Support Network
The Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization that offers information, education,
support, advocacy, and hope to individuals affected by chronic kidney disease. RSN strives to increase patient/family
understanding of kidney disease, thereby encouraging the self-sufficiency that can allow patients to take control of the
course and management of their disease. Please visit www.RSNhope.org to learn about our programs and services and why all
patients with kidney disease have renewed hope for a better tomorrow.
Media Contact:
Jessica Garcia
(818) 287-8318
###
YWCA Honors RSN President
Lori Hartwell Receives Heart & Excellence Award
Download Word document
 Glendale, CA (April 6, 2011) – Lori Hartwell, RSN President & Founder, receives Heart & Excellence Award from the YWCA of
Glendale during the 14th Annual Legacy Luncheon on Thursday, March 31, 2011. Hartwell, who is recovering from a recent
kidney transplant (her fourth), made her first public appearance to accept this honor.
The YWCA of Glendale, which was founded in 1926, started an emergency shelter in 1979 for women and children who were
victims of domestic violence. They have expanded to have a Women's Service Center and training to prevent domestic violence,
a program called EncorePlus, which helps with screening for breast and cervical cancer in low income women, and Camp "Y",
which is a series of one week sessions during the summer for children. This year’s Heart & Excellence Awards honored women
in the community who have devoted themselves to helping women and children.
Through RSN’s programs, Hartwell has brought support and hope to people with kidney disease. Adolescents and young adults
enjoy the Renal Teen Prom, which is celebrated every year since 2000. This special event is the embodiment of Lori’s famous
saying “one friend can make a difference”, as it allows young people living with this illness to connect with peers and
celebrate their joys and achievements. “I am honored to have received this award in the company of such giving, accomplished
women”, said Hartwell.
Photo: (left to right) Carol Ann Burton, MD (YWCA BOD Member), Lori Hartwell (RSN President & Founder), Michaela Pereira
(KTLA News Anchor)
About Renal Support Network
Renal Support Network is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those
affected by chronic kidney disease. RSN strives to motivate and assist patients in developing their personal coping skills, special
talents, and employability by educating and empowering them (and their family members) to take control of the course and management
of their disease. Renal Support Network values people with kidney disease and helps them become self-sufficient through education,
advocacy, and hope for a better tomorrow.
Media Contact:
Jessica Garcia
(818) 287-8318
###
Twelfth Annual Prom for Kidney Teens
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RSN Renal Teen Prom Coming January 16th, 2011
GLENDALE, CA (November, 29 2010)--The 12th Annual Renal Teen Prom, “Out of This World,” sponsored by Renal Support Network (RSN),
will be held on Sunday, January 16, 2011 at Notre Dame High School. Set in the style of a gala senior prom, there is no charge for
teenagers and young adults with kidney disease and one guest to attend the event.
More than 400 kidney teens (ages 14-24) who are on dialysis, pre-dialysis, or with a transplant and their guests from throughout
Southern California attend. The prom also attracts teens from as far as Washington, Arizona, Texas, Colorado, and New Jersey.
These young people experience a night of dancing and entertainment, dinner and hors d’oeuvres, limousine rides, glamour photos,
and appearances by Hollywood celebrities who sign autographs and mingle. This year RSN is excited to host America’s Got
Talent star magician Michael Grasso, who was one of the top ten finalists on the show. As a three time kidney transplant recipient, Grasso has a
personal connection to kidney disease and can relate to and inspire the young people who attend this memorable event.
To ensure that everyone in attendance feels elegant, evening gowns (which the young women can keep) are donated, as are ties for the
young men. Transportation to the Prom from Southern California areas can be provided.
Notre Dame High students, alumni and RSN volunteers devote an entire weekend decorating the school gymnasium for the prom. The
decorations include extravagant sets designed by Hollywood movie professionals. The community (patients, health care professionals,
family members and numerous volunteers) comes together to make this event an annual success and a special night the teens will never
forget.
The Renal Teen Prom is the inspiration of Lori Hartwell, RSN’s President and Founder, who missed her own prom due to kidney disease.
Many teenagers with kidney disease miss large amounts of school and their own Prom because of prolonged absences due to health issues.
The Renal Teen Prom brings these young people together to share their experiences, strengths, and hopes with other kidney teens. It
lets them know they are not alone and that “one friend can make a difference.”
Those interested in requesting an invitation or making a donation should contact Renal Support Network at (866) 903-1728.
About Renal Support Network
Renal Support Network is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those
affected by chronic kidney disease. RSN strives to motivate and assist patients in developing their personal coping skills, special
talents, and employability by educating and empowering them (and their family members) to take control of the course and management
of their disease Renal Support Network values people with kidney disease and helps them become self-sufficient through education,
advocacy, and hope for a better tomorrow.
Media Contact:
Jessica Garcia
(818) 287-8318
###
October 5, 2010
FOR IMMEDIATE RELEASE
Media Contact:
Donald Wilson or Sheryl Craig
dwilson@mcraigassociates.com or secoops@mcraigassociates.com
310-899-2900
CELEBRITIES UNITE TO PLAY THEIR CARDS FOR RENAL SUPPORT NETWORK (RSN)
ABC’S “Port Charles,” Dale Wade Davis and ABC7 News Anchor,
Phillip Palmer Host Celebrity No Limit Texas Hold’em Poker Tournament to Raise Money and Awareness for RSN,
October 17th
(Los Angeles, CA) – Helping hands come together to beat the odds against kidney disease. On October 17th at
The Bicycle Casino, Dale Wade Davis of ABC’s “Port Charles” and Phillip Palmer, ABC7 Anchor, host a No Limit
Texas Hold’em Poker Tournament featuring many stars from the Los Angeles area. Major cash prizes will be awarded
to the top nine winners. Renal Support Network (RSN) is a patient-run non-profit organization that provides non-medical
services to those affected by chronic kidney disease (CKD).
The motivation behind RSN is close-to-home for both Davis and Palmer. In 2007, Palmer donated one of his kidneys to Davis.
“There is a critical shortage of donor organs and so many people are currently on dialysis while waiting for a lifesaving
organ,” says Davis. “I was one of those people and I am tremendously grateful for the kidney transplant I received from my
friend, Phillip. This event will help raise much-needed funds for RSN patient centered programs and convey awareness about
kidney disease and organ donation.”
WHAT: Celebrity Poker Tournament
WHEN: Sunday, October 17, 2010
- 12:00pm: Learn to Play
- 2:00pm: Gaming Begins
WHERE: The Bicycle Casino
7301 Eastern Ave.
Bell Gardens, CA 90201
HOW: Order tickets at www.RSNhope.org:
- $225 for players*
- $50 for non-players*
*Must be 21 years+
WHO: Matthew Borlenghi (General Hospital), Marc Brown (ABC7 Anchor), Michael Cudlitz (Band of Brothers/Southland),
Nadia Dawn (Spring Break ’83), Scott Elrod (Men in Trees), Rob Fukuzaki (ABC7 Sports Anchor), Stephen Furst (Animal House),
Dennis Haskins (Saved by the Bell), Jackie Johnson (KCAL9 Weathercaster), Paula LaBaredas (Kelsey Grammar Bill Zucker Comedy Hour),
Camryn Manheim (The Practice), Christina McLarty (KCAL9 Reporter), Alan Mendelson (newscaster), Leyna Nguyen (KCAL9 Anchor) and
Joe Reitman (Legend of Neil), among others.
Participants who purchase tickets in advance will receive an extra $500 in chips. Rebuys will be available. All tickets include
buffet lunch. Ticket proceeds benefit Renal Support Network and are tax deductible.
ABOUT Renal Support Network:
Renal Support Network is a non-profit, patient-focused, patient-run organization that provides non-medical services to those
affected by chronic kidney disease. RSN strives to motivate and assist patients in developing their personal coping skills,
special talents, and employability by educating and empowering them (and their family members) to take control of the course
and management of their disease. RSN values people with kidney disease and helps them become self-sufficient through education,
advocacy and hope for a better tomorrow. Visit RSNhope.org for more information.
###
Renal Support Network Launches HOPEline en Español
See Press Release in Spanish
Spanish Language Support Line for Patients
Glendale, CA (September 16, 2010) - Renal Support Network (RSN) announces the implementation of a long-planned
centralized toll-free phone line that will allow Spanish speaking people affected by chronic kidney disease (CKD)
to call a fellow patient for peer support.
The Spanish language HOPEline en Español is available now. By calling toll-free (800) 780-4238 from 10am to 8pm PT,
kidney patients who are just beginning their CKD journey or trying to “stay on the path” can speak in Spanish to
knowledgeable, compassionate peer patients and retain their anonymity.
“Sharing experiences, our strength and hope for the future with someone who has been there is vital to our well-being,”
says Renal Support Network, President and Founder, Lori Hartwell. “The success of our English
HOPEline has made us see
how valuable this resource is.”
Twenty-six million Americans have (CKD). Close to 500,000 people in the United States are on dialysis.
Understanding the importance of peer group interaction, RSN brought together HOPEline en Español as a tool to support
those living with this life threatening disease and who are more comfortable speaking in Spanish.
“As a HOPEline operator, I find great joy and satisfaction in being able to tell my story and encourage people that they
can overcome the many obstacles kidney disease can present,” says Marissa Carr.
To learn more about the HOPEline en Español, visit
RSNHope.org.
Renal Support Network is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those
affected by chronic kidney disease. RSN strives to motivate and assist patients in developing their personal coping skills,
special talents, and employability by educating and empowering them (and their family members) to take control of the course
and management of their disease Renal Support Network values people with kidney disease and helps them become self-sufficient
through education, advocacy, and hope for a better tomorrow.
HOPELine en Español is made possible with support from Amgen, Abbott, Fresenius Medical Care and National Renal
Administrator’s Association.
Press Contact:
Jessica Garcia
(818) 287-8318
Jessica@RSNhope.org
###
RSN Announces Winners of 8th Annual Essay Contest!
“Lessons Learned From a Book, Movie or Song That Help Me Deal With CKD”
Glendale, CA (September 9, 2010) — “Lessons learned from a book, movie or song that help me deal with CKD” was
the theme of the Renal Support Network’s (RSN) 8th Annual Kidney Times Essay Contest, which had only one qualification
for entry - to have been diagnosed with chronic kidney disease.
"This year we received another great selection of compelling essays that highlighted the writing talents and insights of
people of who have CKD," stated Lori Hartwell, RSN Founder and President. "Narrowing these essays down to determine the
winners was a real challenge. It was a horse race!”
The winning essays can be viewed online by logging onto the KidneyTimes (www.kidneytimes.com) health library, or through
the Renal Support Network homepage (www.RSNhope.org). Awards were given for first, second, and third place, with five
essays chosen for honorable mention.
Amanda Ratz from Ballwin, Missouri, this year’s first place winner, said, “I am so very honored and excited about winning!
Kidney disease can be very difficult to accept, handle and ultimately survive. If you stay positive, even in the darkest
moments of your disease, you can and will see the beauty of life and gain strength and hope to pull yourself through.”
The second place winner, Kristi Flynn, from Grovetown, Georgia, said, “I'm honored to share my experience of perseverance
and hope. I encourage everyone to listen to the song that inspired my essay and which still continually inspires me."
RSN would like to congratulate the authors of the winning essays of this year’s 8th Annual KidneyTimes Essay Contest:
First Place Winner: Amanda Ratz, of Ballwin, MO
“How Life is Like a Box of Chocolates”
Second Place Winner: Kristi Flynn of Grovetown, GA
“Swim”
Third Place Winner: Mary Wu of Ossining, NY
“Somewhere Between Life and Death”
Honorable Mention
Susan Decuir of Carrollton, TX
“A Cheerful Heart and a Good Report”
Rita Knight-Gray of Cleveland, OH
“The Art of Living”
Terri Waddell of Cleveland Heights, OH
“I Will Survive”
Jasmine Davis of Houston, TX
“Never Give Up Even When It Gets Hard”
Lawrence James Wildman of Halifax Nova Scotia, Canada
“Man’s Search for Meaning”
The theme for next year’s 9th Annual Essay Contest will be: “What hobby helps improve your quality of life and helps
you forget the many challenges kidney disease presents?” Look for details on KidneyTimes.com.
RSN is a nonprofit, patient-focused, patient-run organization that provides non-medical services to people with chronic
kidney disease (CKD). It strives to help patients develop their personal coping skills, special talents, and employ the
tools empowering them and their family members to take control of the course and management of the disease. A vital role
of RSN is to provide the patient's perspective on the needs and capabilities of people with CKD. RSN values those with
kidney disease and helps them become self-sufficient through education, advocacy, and hope for a better tomorrow.
# # # #
Leading Kidney Organizations Partner to Offer Unified Anemia
Education Resource for Patients
Anemia is a Common Side Effect of Kidney Disease;
New Educational
Supplement Offers Questions to Ask Your Doctor, Guidelines for Tracking
Anemia and Other Tips for Patients
WASHINGTON, D.C., July 28, 2010 – In order to help chronic kidney
disease (CKD) patients learn more about anemia and its proper
management, the American Association of Kidney Patients (AAKP), American
Kidney Fund (AKF), Dialysis Patient Citizens (DPC), National Kidney
Foundation (NKF), Renal Physicians Association (RPA) and Renal Support
Network (RSN) have teamed up to offer a new anemia education resource
available at no charge to kidney patients and their physicians.
Anemia is a condition characterized by a lack of healthy red blood
cells. Since it can be caused by inadequate levels of the hormone
erythropoietin (EPO), which is normally made by the kidneys, anemia is
very commonly experienced by kidney patients. If left untreated, anemia
can lead to loss of energy, headaches, trouble sleeping, dizziness,
shortness of breath, lack of appetite and a rapid heart rate. The
Treating Anemia education supplement was created to help patients work
with their doctors to identify anemia’s symptoms, discuss the various
treatment options available and monitor red blood cell counts together.
“Particularly when it comes to kidney disease and its related
conditions, it is important for patients to have an open dialogue with
their doctors regarding their care,” said Ed Jones, M.D., President of
RPA. “This new unified education resource will help empower patients to
ask questions and discuss the concerns they may have with anemia and
their treatment, thereby improving patients’ peace of mind and
compliance with their prescribed treatments.”
Topics included in the anemia management resource include the
importance of treating anemia, Erythropoiesis Stimulating Agents (ESAs)
and other anemia treatments, questions for patients to ask and a table
for patients to reference in tracking their anemia management with their
doctor. The information will be distributed and made available online
through AAKP, AKF, DPC, NKF, RPA and RSN.
Contact: Courtney Goodwin, 703-966-1214
# # # #
RSN Expands Speaker Program KidneySpeak, a New Resource for Speakers and Event
Organizers
Glendale, CA - July 15, 2010 - KidneySpeak, RSN's new speaker program,
is designed to provide the tools and resources to help patient
presenters become as effective as possible in educating their community
about organ donation and chronic kidney disease (CKD).
KidneySpeak will connect speakers with meeting/event organizers across the country.
"We get requests for speaking engagements from all over the country and
don't always have a speaker in their area," says Lori Hartwell, RSN
President and Founder. Through KidneySpeak, RSN will be able to serve as
a match-maker between the organizers and the speakers; both will be
submitting applications online. RSN is encouraging the kidney community
to share KidneySpeak with local service clubs and meeting planners to
help spread awareness.
KidneySpeak is now the home of the Patients
Educating Patients & Professionals (PEPP) program. The PEPP program has
a series of educational presentations geared to people who are on
dialysis and health care professionals that has reached thousands of
people since its inception. "I love being able to share my own journey
with kidney disease. Helping people feel empowered about their choices
brings me great satisfaction," states Bill Dant, a long time kidney
survivor.
RSN patient-speakers are respected throughout the renal
community providing inspiration and information to patients and
professionals across the country. If you are looking for ways to educate
others about kidney disease or are looking for patient speakers for a
healthcare meeting,
KidneySpeak is the place to look.
KidneySpeak is made possible by
support from Amgen, Fresenius Medical Care and Abbott.
About Renal
Support Network Renal Support Network offers informative, often
entertaining patient-directed programs that bring health, happiness and
hope into the lives of others affected by chronic kidney disease,
whether in its early stages, on dialysis or after a kidney transplant.
RSN is a non-profit, patient-run organization that strives to help
others develop their personal coping skills, special talents and
employability, by educating and empowering them, as well as their family
members, to take control of the course and management of the disease.
Visit
www.RSNhope.org to learn more about our programs and services.
Renal Support Network Media Contact:
Jodie Younse
818-937-4419
Jodie@RSNhope.org
####
RSN Announces the First Ever Chronically Happy
YouTube Video Contest
Share your tips for chronically happy living through video.
Glendale, CA (June 10, 2010) — Grab your new flip camera—or any other digital
video camera—and capture some tips on how you live a joyful life in spite of
kidney disease. If you or someone you know has chronic kidney disease, we want
to hear from you! Tell us your tips and strategies on how you manage your
disease; share words of wisdom and guidance on how you keep a positive outlook
on a daily basis.
“Seeing fellow patients live a joyful life helps us see a future for ourselves,”
says Lori Hartwell, Founder and President of Renal Support Network (RSN). “Our
written essay contest has become so popular we wanted to try a more dimensional
medium.”
Videos can only be submitted by uploading your file to YouTube and emailing
Renal Support Network (RSN) the link to the video. Projects should be between 30
seconds and 4 minutes. No inappropriate material will be considered. Cash prizes
will be awarded to the first, second, and third place winners. The deadline for
links to be emailed to us is July 18, 2010. Send the link to your video, your
name, address, and phone number to video@RSNhope.org with the subject “RSN Video
Contest.” Be as creative as you want! For more details go to KidneyTimes.com
EasyLink Access number 493.
Videos will be judged by a panel of media experts and people with kidney disease
for appropriateness, originality, creativity, and informative recommendations.
Renal Support Network offers informative, often entertaining patient-directed
programs that bring health, happiness and hope into the lives of others affected
by chronic kidney disease, whether in its early stages, on dialysis or after a
kidney transplant. RSN is a non-profit, patient-run organization that strives to
help others develop their personal coping skills, special talents and
employability, by educating and empowering them, as well as their family
members, to take control of the course and management of the disease.
Media Contact:
Jodie Younse
818-937-4419
Jodie@RSNhope.org
####
RSN Announces the 8th Annual Kidney Times Essay Contest Theme: “Lessons Learned
From a Book, Movie, or Song that Help Me Deal with CKD”
Glendale, CA (April 20, 2010) — Yes, it’s that time again! Grab your pens,
paper, computer, typewriter, crayons, or whatever it takes to get you writing
for the Renal Support Network’s 2010 Kidney Times Essay Contest. Everyone has a
favorite song, a movie that has inspired them or a book that has touched them.
We want to know if any of these have helped you deal with kidney disease. That’s
why our essay contest theme this year is: “Lessons Learned from a Book, Movie,
or Song that Help Me Deal with CKD.”
Is there a song that gets you through dialysis? Do you watch a certain movie
when you are feeling a little down? Have you been motivated by a book to become
active in the kidney community? Share with us how a book, movie, or song has
helped you cope with kidney disease and you could win one of the following: 1st
place wins $500, 2nd place wins $300, and 3rd place wins $100.
Lori Hartwell, Founder and President of RSN states, “The essay contest has
become a tradition at RSN. Every year we receive a plethora of essays from
patients across the country and it reminds us how health, happiness & hope are
thriving in this community.”
We’ve met a lot of people with kidney disease over the years. We know there are
a tremendous number of you living fulfilling lives despite every day dialysis,
three times a week dialysis, or taking daily handfuls of medication to prevent
your transplant from rejecting.
We’d like to hear from all of you. The essay contest is open to anyone who has
been diagnosed with chronic kidney disease. All entries must be received by
August 15, 2010. Contestants must include their complete name, address, phone
number, and email address. Essays must be typed and can be submitted by mail,
email, or fax. Prospective entrants can visit
www.KidneyTimes.com or
www.RSNhope.org for more information and
contest rules. Previous winning essays can also be read on KidneyTimes.com.
Essays will be judged by an expert panel of writers and kidney patients for
appropriateness to the theme, originality of idea, creativity, and technical
expertise.
Renal Support Network (RSN) offers informative, often entertaining
patient-directed programs that bring health, happiness and hope into the lives
of others affected by chronic kidney disease, whether in its early stages, on
dialysis or after a kidney transplant. RSN is a non-profit, patient-run
organization that strives to help others develop their personal coping skills,
special talents and employability, by educating and empowering them, as well as
their family members, to take control of the course and management of the
disease.
Media Contact: Jodie Younse
818-937-4419
Jodie@RSNhope.org####
Guide to Living Successfully with a Chronic Illness Now on Audio
Author to give away free copies to first fifty who share tips for living
joyfully
Glendale, CA (April 19, 2010)
Award winning speaker and author Lori Hartwell today released a 6-CD unabridged set of her
renown book, Chronically Happy: Joyful Living in Spite of Chronic
Illness, which relates her optimism for life despite living with kidney
disease for over 40 years.
The first 50 people who visit www.ChronicallyHappy.com to share a tip (or tips) on how they
are living a joyful life with a chronic disease will receive a free copy
in the mail.
“It can be hard to concentrate and read when you do not feel well,” said Hartwell, who had
many patients, family members and professionals request an audio version
of Chronically Happy. “Diabetics and older people have problems with
vision; dialysis and chemo patients can be confined for hours at a time.
An audio version allows you to learn and listen as you drive to and from
doctor’s appointments or undergo treatment.”
Chronically Happy is narrated by Wendy Carter, Audie award-winner Scott Brick, Emmy award
winning actor and producer Stephen Furst, and Hartwell herself. The
production is supported by an educational donation provided by Amgen.
The insightful, often humorous, and touching story of how Hartwell chose to live life rather
than succumb to its obstacles is laid out in her recordings, which
chronicle her approach of taking simple, logical steps in order to
realize one’s dreams.
Hartwell, who has had kidney disease since age two and is awaiting her fourth kidney
transplant, is President and Founder of Renal Support Network (RSN). RSN
is a non-profit, patient-run organization providing service, support,
and advocacy to renal patients and their families.
Chronically Happy is also available through iAmplify, which offers the world's largest
selection of expert audio and video downloads. It can be downloaded in
MP3 format and can be played with almost any media player, including
Windows Media Player, iTunes and WinAmp. A Kindle version is also
available on Amazon.com.
For more information about Lori Hartwell, Renal Support Network or Chronically Happy: Joyful
Living in Spite of Chronic Illness, please visit
www.chronicallyhappy.com.
####
 Renal
Support Network to Host Live Twitter Chat for World Kidney Day
Aiming to Promote Kidney Health and Joyful Living to Chronic Illness
Patients
Glendale, CA (March 5, 2010)
WHO: If you are a person living with any chronic disease, a family
member or caregiver, or have just been diagnosed and don’t know what to
expect, come connect with another person who can share their experience,
strength and hope!
WHAT: Lori Hartwell, three-time kidney recipient and author of
Chronically Happy: Joyful Living In Spite of Chronic Illness joins
volunteers from the Renal Support Network to discuss positively
managing the course of chronic disease—and find out if you are at risk
for chronic kidney disease and ways to prevent it.
This session features an open Q&A for patients and caregivers who have a
chronic illness to share their experience, strength and hope with each
other.
WHEN: World Kidney Day March 11, 2010, 6:00-8:00 p.m. PST
WHERE: Live virtual chat over Twitter
HOW: Anyone can submit questions from anywhere in the world and enter to
win prizes. To participate in the Twitter Chat, use the hashtag #chronicallyhappy
at http://roomatic.com/ or any
Twitter client.
PRIZES: There will be great prizes awarded every 15 minutes during the
chat, including $25 Amazon gift certificates and copies of the new audio
release of Chronically Happy. Everyone who follows @chronicallyhppy (no
a) and @renalsupport before the chat will automatically be entered to
win a $100 Grand Prize Amazon gift certificate. See you there!
Contact: Lisa Singelyn
Twitter: @counterintuity
lisa@counterintuity.com
818-731-0935
#####
Amgen Foundation Approves $150,000 Challenge Grant to Renal Support Network’s
HOPEline
Glendale, CA (February 25, 2010) - The Amgen Foundation has
approved a challenge grant totaling $150,000 to Renal Support Network
(RSN) to support RSN’s HOPEline, the organization’s toll-free hotline.
The grant was issued in the form of a challenge to help RSN build its
base of financial support and introduce RSN to new funders. The Amgen
Foundation has provided an initial gift of $100,000 and will contribute
$50,000 to RSN upon the organization raising $250,000 from other donors.
“With supporters such as the Amgen Foundation, RSN
can continue to instill hope, health, and happiness into the lives of
those affected by chronic kidney disease (CKD),” said RSN’s Founder and
President Lori Hartwell. “Kidney disease is a growing epidemic with 1 in
9 American adults suffering from CKD. The Amgen Foundation’s support
will help bring awareness to CKD and to RSN’s stellar programs and
services which not only serve CKD patients, but also their family
members and healthcare providers.”
RSN operates HOPEline—a toll-free hotline at (800)
579.1970—for CKD patients and their loved ones. Callers are connected
with a long-term survivor who can answer questions and provide
encouragement, support, and resources.
“Often newly diagnosed people do not know where to
turn,” Hartwell said. “And navigating the day-to-day issues of CKD can
be daunting, even for experienced patients. HOPEline offers the
opportunity to speak with a veteran patient who has been where the
caller has and can share valuable insights from his or her own
experiences.”
After speaking with a HOPEline operator, one caller
said, “I cried and you listened. You talked with me about taking small
steps and were supportive and have understanding. It is so easy to
complain about the cards that are dealt to us, but your positive
attitude has really helped and has been terrific.”
RSN was founded on the principle that people with CKD
can help each other find the support and empowerment that is necessary
to take charge of the course and management of their own disease.
“In recent studies hope has emerged as a significant
predictor of a patient’s ability to adjust to a chronic illness,” said
Hartwell. “Patients with CKD tend to have higher levels of anxiety and
depression than the general public, so it is vital that they receive
appropriate resources that will help them develop active coping
strategies.”
RSN’s slogan—“An illness is too demanding when you
don’t have hope”—reflects the importance of hope for CKD patients to
lead healthier, happier lives.
To learn more about other RSN programs and services,
please visit RSN’s website at
www.RSNhope.org.
About RSN
Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run
organization that helps people with chronic kidney disease become
self-sufficient through education, advocacy, and employment. Since 1994,
RSN has provided programs and services that help patients find resources
and information; establish social networks; learn more about the
management of their disease; and become more actively involved in their
own care.
#####
Jack Black Gives Back at RSN Renal Teen Prom
SHERMAN OAKS, CA (January 17th,
2010)-- For one precious night, movie star Jack Black helped more than
300 teens forget about dialysis and renal disease and enjoy a right of
passage most kids take for granted—the prom.
Sandra Soto of Las Vegas drove daughter Rebecca, 19, a three-time kidney
transplantee, over 270 miles to attend her first prom, held at Notre
Dame High School. “It was so exciting watching her get ready and put on
makeup and a fancy dress,” she said through tears. “Just seeing her face
when Jack Black appeared was amazing. We appreciate life so much more
because of what she’s been through.”
Maria Curiel, 19, was part of the crowd that erupted into cheers and
fist pumps Sunday evening when Black arrived in a mask and surprised
them with photos, personal autographs and an a cappella concert at the
11th annual Renal Teen Prom, presented by the Renal Support Network
(RSN) of Glendale, CA.
Curiel, of Los Angeles, says the prom is a
chance to experience normal teen life. “It’s fun to go to a real prom
with other people who understand what I’m going through,” she said. “I
missed a lot of high school because of dialysis.” Curiel—attending her
4th renal prom—was eager to share news of her recent kidney transplant.
The teens—hailing from across California and the southwest—had their
makeup done, danced to a DJ, ate renal-friendly food, and partook in
limo rides and a photo booth—all at no cost. Even the dresses, ties and
rides to the prom were donated by volunteers.
Lori Hartwell, founder and president of RSN, created the Renal Teen Prom
in 2000 because she missed her own prom due to chronic kidney disease.
“I spent all my teenage years on dialysis. It’s so important for these
kids to get together, because they can feel so isolated,” she said.
“Being with hundreds of kids who have gone through something similar
makes them happy and creates friendships that last a lifetime.”
The Renal Support Network is a patient-run, patient-focused organization
that offers services to empower people with kidney disease.
The evening was sponsored by RSN, Notre Dame High School, Amgen, Davita,
Abbott, Fresenius Medical Care, Genzyme, Astellas, AMAG, One Legacy,
Roche and American Regent, and staffed by dozens of volunteers.
For information on RSN and Prom 2011, visit
www.rsnhope.org
#####
Charity Accessory Party to Help Send Teens to Renal Prom
Community invited to donate items or attend fundraiser for
local renal charity.
Glendale, CA (November 30, 2009) -
The Renal Support Network (RSN) will host a charity accessory sale on Saturday, December 12th,
from 11am to 4 pm at 1311 N. Maryland Ave. in Glendale.
All proceeds will benefit RSN’s 11th Annual Renal Teen Prom,
held yearly for Southern California teens with kidney disease.
A large variety of high-quality accessories will be on sale, including
many designer pieces. Donated new or gently used accessories such as purses, jewelry, scarves,
belts, hats, ties and more are also needed for the unique fundraiser.
Teens with renal disease can attend the prom beginning at age 14,
and many have made lifelong friends they look forward to seeing each
year. Last year, over 300 renal patients and their dates attended.
“I created the Renal Teen Prom because I missed my own prom due
to chronic kidney disease, which I have had since I was two,” said Lori
Hartwell, Founder and President of RSN. “I spent all my teenage years on dialysis. We want to give these
teens the chance to get to know others who are like them, walking in the
same shoes.”
The cost to send each teen to the renal prom is well over $100, yet RSN,
their volunteers and sponsors provide the entire night at no charge. This includes donated dresses and ties for the teens;
transportation, dinner, entertainment, glamour photos and even on-site
nephrology nurses to tend to special medical needs.
The community is invited to find fantastic treasures at the party or to
donate items. Contact Renal Support Network at 1-866-903-1728 to donate. Pick-up service is available in local areas.
For more information about the Renal Support Network, the Renal Teen
Prom, and the Accessory Sale, visit
www.RSNhope.org
#####
Kidney-Issue Play Nabs Five Ovation Nominations for RSN
Glendale, CA (October 26th,
2009) — Renal Support Network (RSN) has landed five Ovation Award
nominations for its groundbreaking production of “Who Lives?,” a play that explores the
1960’s anonymous citizens committee that determined the life-or-death fate of kidney patients applying for
dialysis.
The LA Stage Alliance Ovation Awards are the only peer-judged theatre
awards in Los Angeles and are the
"...highest-profile contest for local theatre..." according to the Los
Angeles Times.
RSN is the only non-theatre entity to receive Ovation nominations this
year, and one of a handful of producers to receive five or more nominations, placing RSN alongside major companies
as The Geffen Playhouse, Center Theatre Group, Ebony Repertory Theatre, A Noise Within and the Open Fist
Theatre Company. RSN’s five nominations for “Who Lives?” were: Lead Actor in a Play, Matt
Gottlieb; Costume Design - Intimate Theatre, Catherine Glover; Lighting Design - Intimate Theatre, Jeremy
Pivnick; Scenic Design - Intimate Theatre, Will Pellegrini and Sound Design - Intimate Theatre, Jeffrey Porter.
“We are very humbled to be in such great company,” said Lori Hartwell,
Founder and President of RSN and a kidney disease survivor since 1968. “I wanted to tell the story of the
birth of modern medical ethics and the relationship to the 1960’s ‘life-or-death dialysis committees’ to the
public. To share fellow patients’ history is a passion and a privilege. Our cast and crew obviously shared that vision,
and I am delighted for each of our nominees.”
According to LA Stage Alliance, the Ovation Awards present an
opportunity for the theatre community to join together and focus public attention on Los Angeles’ rich and lively
performing arts scene. Another goal of the program is to draw national attention to the quality and quantity of
professional theatre in Los Angeles. Voters are L.A. theatre professionals chosen each season by the Ovation
Awards Review Committee (through an application process). The list of award nominees is determined by a
tabulation of scores conducted by the entertainment accounting firm Green, Hasson & Janks, LLP.
The Ovation Awards ceremony will take place on Monday, January 11, 2010,
at the Redondo Beach Performing Arts Center, home of the Civic Light Opera of South Bay Cities. The
curtain will go up at 7:30 pm. More info on the ceremony can be found at
www.LAStageBlog.com/ovation-awards.
ABOUT RSN:
Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run
organization that provides non-medical services to those affected by chronic kidney disease (CKD). RSN strives
to help patients develop their personal coping skills, special talents, and employability by educating and
empowering them (and their family members) to take control of the course and management of the disease. A vital role
of RSN is to provide lawmakers and policymakers with the patients’ perspective on the needs and
capabilities of people with CKD.
For complete information, visit
www.rsnhope.org/programs/WhoLives/WhoLives.php.
#####
RSN’s Announces Winners of 7th Annual Essay Contest
How Do You Live A Joyful Life in Spite of Kidney
Disease?
Glendale, CA (October 5th ,
2009) — “What Helps Me Live a Joyful Life in Spite of Kidney Disease?”
was the theme of the 7th Annual Renal Support Network’s (RSN) Kidney
Times Essay Contest, which has only one qualification for entry: to have
been diagnosed with chronic kidney disease.
"I am always so impressed by the wealth of ideas and how
thought-provoking these essays are," stated Lori Hartwell, RSN Founder
and President. "We were very pleased with the winning essays.
Narrowing these essays down to determine the winners was a real
challenge.”
The over one-hundred-fifty essays submitted came from a wide range of
patients of all ages, and provided valuable insight into how one can
cope with kidney failure with the spirit of Health, Happiness, & Hope.
The five winning essays can be accessed by logging onto the Kidney Times
(www.kidneytimes.com) online
health library, or through the Renal Support Network homepage (www.RSNhope.org).
Awards were given for first, second, and third place, with two
additional awards, one for the best essay in Spanish, and one for the
best essay by a young person: the Junior Achievement Award. First
place received a check for $500, second place $300, third place, best
Spanish essay, and junior achievement winners each received $100.
Hailing from New Jersey, Ronda Cluff, first place winner, said, “Writing
this essay encouraged me to focus on what really keeps me happy and
motivated – not what I stand to lose through kidney disease, but what I
have that time and illness can’t take away. By staying informed,
I’m taking whatever control I can to create a good outcome.
Second place winner, Marvin Burney, said, “Kidney Times affords those of
us affected by kidney disease with an opportunity to share our stories
of hope... I want the world to know that my life has mattered, and
Kidney Times has helped me do that.”
All those who wrote essays will receive a handsome certificate
acknowledging their participation in the contest, and a copy of
Hartwell’s inspirational book about joyful living despite chronic
illness: Chronically Happy.
"We appreciate the effort of everyone who participated and did such an
excellent job,” said Hartwell.
RSN would like to congratulate the authors of the winning essays, listed
below:
First Place Winner: Ronda
Cluff, of Galloway, NJ, wrote about taking the time to find joy
sprinkled throughout our daily lives. Cluff talks about learning to live
in the moment despite a chronic illness and finding strength through her
relationship with her daughter.
Second Place Winner: Marvin
Burney of Clarkton, NC wrote about his experiences coaching a
youth baseball team while managing chronic kidney disease, and how it
brings him joy and keeps him young.
Third Place Winner: Jorita
Lehman of Welasco, TX says in her essay, “Life isn’t about
waiting for the storm to pass, it’s about learning to dance in the
rain!”
Best Essay in Spanish:
Barbara Velasques of Hobbs, NM wrote about how her family and
faith inspire her to embrace life. “If you laugh at every opportunity,
then you don’t have to think of what is wrong or what hurts, only of
what else to laugh about!” writes Velasques.
Junior Achievement Award: Brandon
Albert of Carmel, CA, age 11, finds a myriad of things to be
joyful about despite living with renal failure from the age of 5 and
having already undergone a failed transplant. “…Here’s my advice,
live your life like the kids that don’t have kidney disease!” writes
Brandon.
The theme for next year’s 8th Annual Essay Contest will be: “Lessons
Learned From a Book, Movie or Song that Help Me Deal with CKD."
RSN is a nonprofit, patient-focused, patient-run organization that
provides non-medical services to people with chronic kidney disease
(CKD). It strives to help patients develop their personal coping skills,
special talents, and employ the tools empowering them and their family
members to take control of the course and management of the disease. A
vital role of RSN is to provide the patient's perspective on the needs
and capabilities of people with CKD. RSN values those with kidney
disease and helps them become self-sufficient through education,
advocacy, and hope for a better tomorrow.
#####
The Proposed Rule for Reimbursing Dialysis
Care: Learn, Share Knowledge, and Comment
RSN Creates Online Forum
KidneyPublicPolicy101.com to Foster Discussion
Glendale, CA (October 1st, 2009) – The Renal Support Network (RSN) has
created an online forum called KidneyPublicPolicy101.com to help people
with chronic kidney disease (CKD), family members, and healthcare
professionals learn about pending reimbursement changes for patients on
dialysis. The new payment system takes effect in 2011, and will
reimburse all dialysis-related drugs and services in one bundled payment
(that is, medications administered during dialysis and laboratory tests
will no longer be billed separately). The dialysis providers will be
given a standardized bundled payment for each patient’s dialysis
session. This payment rate may be increased based on factors such as:
• The patient’s case-mix (acknowledging some of the increased costs of
providing care for a limited number of comorbidities and individual
patient characteristics),
• Time on dialysis (providing a slight increase in reimbursement for new
patients),
• The size of the dialysis facility (giving low volume dialysis centers
additional reimbursement), and
• Outlier payments (providing a limited means to for dialysis facilities
to recoup financial losses incurred for patients who require more
resources than the norm).
The Centers for Medicaid & Medicare Services (CMS) has also proposed
quality measures to protect patient quality of care. The initial three
quality indicators include the percent of patients with hemoglobin less
than 10 g/dL or above 12 g/dL, and the percent with a URR ≥ 65%.
Additional quality indicators would be added in the future.
“The new payment system may change management and treatment parameters
in dialysis and could negatively impact access to care and quality of
life. It will also lead to an increase in co-pays for many patients,”
stated Lori Hartwell, founder and president of RSN.
RSN’s new online forum is dedicated to the Proposed Rule for reimbursing
dialysis. RSN encourages all patients (and their significant others) who
depend on this system to survive to go to
www.kidneypublicpolicy101.com and participate in the forum. The
comments of healthcare professionals who treat those of us who live with
CKD, public policy professionals, and others interested in the quality
of life of patients with CKD are also welcome.
The forum is organized by topic such as: laboratory testing,
medications, share of costs, home dialysis, quality of care incentives,
and access to care. Users can click on these links for information on
how each topic will be affected by the proposed bundled reimbursement
program. A toll free number dedicate to the Proposed Rule has been
created for patients to ask questions or leave comments and can be
reached at 877-Kidney-Rule (543-6353).
RSN will be developing a position paper on the Proposed Rule to CMS, and
will use the comments posted on the online forum as a vital information
source. The deadline for comments to CMS on the Proposed Rule is
November 16, 2009, so it is crucial that comments be received as soon as
possible. We encourage all who are interested to join the discussion and
let your voice be heard!
To help spread the word, RSN has created a one-page flyer to help get
the word out. To download the KPP101 Flyer, visit
http://www.rsnhope.info/1weKAN/PublicPolicy101FlyerFinal.pdf.
#####
Kidney Survivor!
RSN Regional Patient Lifestyle Meeting in
Salt Lake City, Utah
Salt Lake City, UT
(October 1st, 2009) - Kidney patients, caregivers and healthcare
professionals are invited to attend a free regional meeting “Kidney
Survivor” to learn ways of living long and well with kidney disease.
The meeting will be held on October 10th, 2009, from 9:30am to 3:00pm at
the Holiday Inn Express located at 4465 Century Drive in Salt Lake City,
UT. A renal-friendly gourmet, full-course lunch is provided free
of charge, and will be served around 12:00pm.
Sponsored by the Renal Support Network (RSN), a non-profit patient
focused, patient-run organization, the meeting is organized by William
Dant.
At this meeting local kidney patient RoAnne Faith Dale, who has been on
dialysis 37 years, will receive the award “Utah Kidney Survivor of 2009”
Ms. Dale will also participate in a patient panel. She is the author of
the book “Dialysis Success”.
Meeting organizer William Dant says “This meeting is a chance to hear
and learn the secrets of enjoying life and surviving dialysis for as
much as three decades and more.”
Prepared talks by people with kidney disease and health care
professionals include such topics as “Survivorship Perspectives from a
Nurse Advocate” (speaker: Kristin Larson) and an expert patient panel on
“Becoming a Kidney Survivor.”
To attend, register online at:
http://www.rsnhope.info/programs/Regional%20Meetings/Pt_Lifestyle_Mtgs.php.
Regional Patient Lifestyle Meetings are a program of the Renal Support
Network and are based on the theme of “Health, Happiness & Hope!”
offering a setting where people with kidney disease and their families
can learn about issues related to their illness in a relaxed, friendly
atmosphere. Each meeting—organized by patients within their local
communities—includes presentations by patient-speakers, food, fun,
raffle prizes, exhibitor tables, and a chance to meet other patients,
bringing together people who have kidney disease in order to share
experiences, goals, support, and knowledge. Meetings are held in
various locations throughout the United States. The meetings are
sponsored by Abbott Renal Care, Astellas Pharma, Fresenius Medical Care,
Genzyme, NxStage Medical, and Roche.
The Renal Support Network is a nonprofit, patient-focused, patient-run
organization that provides non-medical services to those affected by
Chronic Kidney Disease. RSN strives to help patients develop their
personal coping skills, special talents, and employability by educating
and empowering them (and their families) to take control of the course
and management of their disease. RSN serves the kidney community
by instilling health, happiness and hope through education, advocacy and
awareness -- one person at a time.
For further information or to register, please call toll-free (866)
903-1728, or visit RSN on the web at
www.RSNhope.org.
#####
Kidney Teens Happy to Have Night to Remember Dialysis or Kidney
Transplant, All are Friends at RSN Renal Teen Prom
Glendale, CA(January 8, 2009)--Nicholas Wahl is 19 years old, but he’s been through more than most
people ever go through in their entire lifetimes: Lymphatic syndrome at age two
with an accompanying diagnosis of kidney failure; Valley Fever at age three, at
which point Nick started dialysis; ten years of dialysis until at age 13, he
received a kidney transplant with a kidney donated by his mother. And, by the
way, he’s had thirty surgeries. That’s a lot to live through.
But on January 18 he’ll be dancing with a date at the Renal Support Network’s
10th Annual Renal Teen Prom at Notre Dame High School in Sherman Oaks. Nick is
one of many teens who will dance the night, and hopefully their cares, away for
a while, enjoying limo rides, entertainment, dancing with music from a DJ, and
having dinner served in a magical setting themed “Somewhere Over the Rainbow.”
“I want to help people because I don’t want others to be affected by what has
affected me throughout my life,” Nicholas says, “and I’m really interested in
disease prevention.” So Nicholas, with help from his aunt who works for a
senator, is creating his own foundation, a 501(c)3 charitable organization to
help patients who don’t know where to turn for help. He will give them
resouMichelle Kats, who lives in Boston with her father, is 19 years old and has
complete kidney failure. Like most people her age, she loves to dance, loves to
be with her friends and loves to help others. But most of her young life has
been conditioned by hospital stays, dialysis treatments, major surgery and more
than a nodding acquaintance with the ICU. Last year, “Mishy” joined 300 other
teens whose stories are similar to hers for the Renal Teen Prom. She’s coming
again this year.
Mishy’s whole family made great efforts to see that for one
night she would feel like a “normal teen girl” at her prom. So she and her
father embarked on a two-week vacation in California to attend a unique prom
just for teens and young adults who have chronic kidney disease (CKD), a disease
that affects one in seven American adults.
“I got to dance.,” Mishy says. “I got to share stories with other people who
were just like me. Because I’m in a wheelchair a lot, people always want to find
out what I’m sick with. This is the first time I wasn’t asked if I was sick. I
just want to say that being at the Renal Teen Prom meant so much to me.”
Holly Cummings fought a family history of kidney disease until she was diagnosed
with renal failure in eighth grade at the age of 13. Now 20, Holly’s own sense
of gratitude for a kidney transplant, has led her to think more about other
people than about herself. When she heard that the 10th Annual Renal Teen Prom
needed prom dresses to give away this year, she went out and bought three, then
donated them to the Renal Support Network which created and organizes the prom.
Holly, who plans to be a missionary, said, “I was really grateful to my mom who
gave me one of her kidneys when I was a freshman in high school. I felt like the
transplant gave me a second chance. I stopped living just for myself and began
living for others.”
Nick, Mishy and Holly will all be at the Renal Support Network’s Renal Teen Prom
this year. They are three of many thousands of teens who have chronic kidney
disease (CKD) and who are finding meaning in lives plagued with chronic illness,
challenging themselves to help others and put their own experience, strength and
hope to good use.
CKD is more widespread than most people realize: 26 million Americans are in
some stage of kidney disease and 20 million more are at risk because of
diabetes, high blood pressure or family history. Anyone with these risk factors
should see their doctor as soon as possible for a simple blood test called GFR.
Kidney disease in its earlier stages is treatable and in certain cases may be
reversed with prompt treatment and proper health maintenance.
People with Stage 5 (final stage) CKD are either in dialysis or have a kidney
transplant. Stage 5 means that the kidneys have failed and will not perform
their function: to clean impurities out of our system, usually through the
blood. Hemodialysis allows the blood to be cleaned by an artificial kidney
machine and may be performed in a dialysis center or at home. Peritoneal
dialysis exchanges the fluid impurities through the peritoneal cavity around
stomach and intestines.
Many dialysis patients are on waiting lists to receive a kidney transplant.
Often the wait is several years because there are too few people who have opted
in to the organ donation program through Donate Life (www.donatelife.net) by
filling out a simple form. Some of the luckier patients have friends or
relatives who match and are able to donate one of their kidneys, but that is
rare.
Most people with kidney disease are able to continue their normal tasks, jobs,
and responsibilities and look perfectly healthy, indistinguishable, in fact from
anyone else.
At the RSN Renal Teen Prom all these factors are leveled out and teens dance,
dine, celebrate and make lifelong friends—just like everybody else!
####
Kidney Transplant Recipient Donates New Prom Dresses to Teens for Renal Teen Prom January 18
GLENDALE, CA (January 2, 2009)—Holly Cummings fought a family
history of kidney disease until she was diagnosed with renal failure in eighth
grade at the age of 13. Now 20, Holly’s own sense of gratitude for a kidney
transplant, has led her to think more about other people than about herself.
When she heard that the 10th Annual Renal Teen Prom needed prom dresses to give
away this year, she went out and bought three, then donated them to the Renal
Support Network (RSN) which created and organizes the prom.
Holly, who lives in Corona, has attended the Renal Teen Prom for several years.
The Prom is a dinner, dance and entertainment for teens with chronic kidney
disease (CKD) and has been held at Notre Dame High School in Sherman Oaks for
the past nine years. This year it will be held January 18.
One of the benefits of attending is to be able to get a free prom dress if the
teen’s family can’t afford to buy one. Part of going to the prom is to look and
feel festive for a night of just being a normal teen. But often, hospital and
doctor bills, medications and health care are overwhelming to the families of
patients, and a prom dress is not in the budget.
Each year, RSN goes around to various pediatric units in hospitals and offers
teens with CKD who are planning to go to the prom a time to try on the donated
dresses.
“It’s an exciting time for the teens,” stated Lori Hartwell, founder and
president of RSN who came up with the idea of the prom. “They come into the room
with all the dresses stacked in sizes and it’s like a wonderland of beautiful
dresses!”
Hartwell is a kidney survivor since the time she was two. “I never attended my
high school prom,” she says. “I’ve had twelve years of dialysis and three
transplants, and I know how hard it can be for the teens just to feel normal for
a little while.”
Holly, who plans to be a missionary, said, “Dialysis gave me nightmares, and I
was really grateful to my mom who gave me one of her kidneys when I was a
freshman in high school. I felt like the transplant gave me a second chance. I
stopped living just for myself and began living for others.”
(more)
RSN is caravanning the dresses to UCLA Medical Center Dialysis Unit January 4,
to Millers Childrens Hospital on January 5, Childrens Hospital Los Angeles on
January 8, St. Joseph’s Hospital in Orange on January 10, and to Loma Linda
Hospital on January 12.
For further information about the Prom, call (866) 903-1728 or check the web for
an invitation RSNhope.org.
###
ABOUT RSN:
Renal Support Network (RSN), a non-profit, patient-run organization, offers
informative, patient-directed programs that bring health, happiness and hope
into the lives of those affected by chronic kidney disease. RSN strives to help
others develop their personal coping skills, special talents and employability,
by educating and empowering them and their family members to take control of the
management of the disease.
PKD: It Runs in the Family
RSN Uploads new KidneyTalk Show
Glendale, CA (November 18, 2008)-- With a family history of PKD—many of her
family members have not made it past their 50th birthday—Linda Oakford made two
life-affecting decisions in her early 20s which actually helped her meet her
husband! Linda’s is a tale of courage, selflessness, and life strategy, an
inspirational story that is the latest KidneyTalk show, just uploaded on the
Renal Support Network web site, RSNhope.org.
People with chronic kidney disease (CKD), whether living with kidney transplants
or on dialysis, are often under many restrictions; so many, that guidelines and
orders from doctors, dieticians, nurses, and dialysis technicians may become
confused. Kidney Talk explores one topic per program in depth through
interviewing patients, healthcare professionals, and caregivers about lifestyle
and treatment issues. It also offers infomercials about the importance of, for
example, restricting potassium, or the need for the best dialysis access for
highest quality of life and long life.
Oakford, who is the Patient Liaison at the Renal Support Network, said that it
felt really good to talk about PKD so that others could hear that life can be
very worthwhile in spite of chronic illness. “Everyone chooses their own path,”
she said, “and while some of my decisions have been very difficult, I have been
blessed to have such wonderful support.”
Education, empowerment, and enthusiasm are key components to KidneyTalk. Nothing
is off limits as the topics run the gamut from tips on dating (Dating with
Kidney Disease: When Do You Tell?) to tips on eating renal-friendly food
(Spicing Up Your Renal Diet and Holiday Eating Tips: Eat, Drink, and Be Careful)
to stepping out of your comfort zone and traveling while on dialysis (Traveling
Around the Globe: Adventures of a Hemodialysis Patient, Taking Dialysis on the
Road).
Leavened by the humor of actor/director/producer Stephen Furst, also a kidney
patient, who created the role of the lovable freshman Flounder in “National
Lampoon’s Animal House,” and Lori Hartwell, long-time kidney patient and
founder/President of the Renal Support Network, KidneyTalk is pod cast bi-weekly
on Tuesdays and is available at RSNhope.org and on iTunes. All shows are
archived for easy access and available 24/7.
Streaming Health, Happiness, and Hope over the Internet twenty-four hours a day,
seven days a week, KidneyTalk is the brainchild of Lori Hartwell, a kidney
survivor for over 38 years.
26 million Americans –1 in 7—have chronic kidney disease and 20 million more are
at risk. For the first time, the number of people waiting for a transplant has
exceeded 100,000. Even those who are not diagnosed should learn the early
warning signs of chronic kidney disease and can often take action to avoid it by
asking their doctor for a simple blood test.
Renal Support Network (RSN), a non-profit, patient-run organization, offers
informative, often entertaining patient-directed programs that bring health,
happiness and hope into the lives of others affected by chronic kidney disease,
whether in its early stages, on dialysis or after a kidney transplant. Visit
www.RSNhope.org for more information.
###
RSN Leaders Convene at ASN Renal Week 2008
Glendale, CA (November 14, 2008)— Renal Support Network, a national non-profit
organization for people with chronic kidney disease (CKD), brought kidney
community patient leaders together for a weekend meeting during the American
Society of Nephrology’s (ASN) Renal Week 2008 in Philadelphia this past week.
“Combining our leadership meeting with Renal Week presented an excellent
opportunity for patient leaders to learn more about scientific breakthroughs and
significant challenges facing the renal community,” stated Lori Hartwell,
President and Founder of the Renal Support Network and kidney patient survivor
for over 40 years. “The goals of the RSN patient leadership meeting is to
continuously educate these leaders for their strong role in advocacy and
community outreach and to build consensus about the national agenda for the
Renal Support Network in the coming year,” she continued.
Coming from all over the United States, the RSN participants attended Renal Week
sessions and exhibits during their first two days in Philadelphia. Many noted
that the conference was more concerned with the patient’s viewpoint than they
had expected, and all were impressed by the number of international healthcare
professionals who attended and the expertise of the healthcare professionals
available at the exhibits.
After attending the conference and exhibits, all participants felt more
knowledgeable about the issues affecting not only kidney patients, but all
healthcare professionals and providers as well.
“I understand the compliance issues better. So many transplants and lives have
been lost because of non-compliance, and it needs to be addressed. I was
surprised to learn that Europe has more compliant patients than North America,”
said Sharon Pahlka, a Seattle resident who was on dialysis for 19 years. “I also
think I am more aware of and interested in the global significance of kidney
disease,” she continued.
“The exhibits were fascinating to me,” stated Pennsylvanian Diana Headlee-Bell,
“I loved to see what was available to us as patients. Most were helpful and
educational in their presentation, and I learned new values of some medications
I was taking.”
Indianapolis resident Martinlow Spaulding, another of the RSN participants, felt
welcomed by renal professionals and their interest in the patient’s perspective.
“At first they were surprised to learn that a patient would attend a
professional meeting, but were very interested in what I had to say.”
“I enjoyed hearing about the dialysis of the future,” stated Julie Siegel from
St. Louis. That thought was seconded by Sherai Onibasa from California who said,
“One of the most important things I learned about was the future of dialysis and
innovations in the pipeline. I would like to learn more about overcoming the
financial barriers to the patient.”
Iowan Denise Eilers attended a session on patient adherence and said, “I was
impressed that all four speakers in the session emphasized an attitude of
patient-centered care as well as a team approach. As someone who has been in the
community for four decades, I feel that this is a highly commendable change.”
“I learned some new progressive ideas for advancing renal care such as the
wearable kidney, the use of probiotics in pre-dialysis patients, and more
advanced technology in PD treatment,” stated Wendy Rodgers of Los Angeles. “But
I would like to see more concern about the patient’s point of view in renal
care,” she added.
A representative from the Centers for Medicare and Medicaid Services (CMS) met
with several RSN patient participants, saying that she was delighted to meet
such educated patients and was “extremely pleased” to see them discussing issues
with the healthcare professionals at Renal Week.
“Renal Week was a wonderful learning and educational experience and RSN hopes to
make this an annual event. I have always believed that if you involve patients
educated about issues impacting the community, they can help develop solutions
to improve the quality of life for fellow patients,” said Hartwell.
Renal Support Network has developed several programs to encourage leadership in
people with CKD, among them the PEPP Patient Speakers Program (Patients
Educating Patients and Professionals) and weKAN (Wellness and Education Kidney
Advocacy Network) which trains people to advocate for quality care for kidney
patients. Local patient meetings throughout the United States are organized and
run by kidney patients in order to inform and empower patients, their families
and other healthcare professionals with current information about quality care
and lifestyle issues for kidney patients. These meetings provide encouragement
and support for patients and their families.
The RSN websites receive 20,000 visitors monthly across the United States and
throughout the world, providing a learning forum for all kidney patients through
its interactive web site RSNhope.org, its KidneyTalk bi-weekly podcast, the
online discussion forum KidneySpace.com with its live chatroom support group,
and its health library KidneyTimes.com. RSN’s philosophy of “Patients helping
patients” is well-demonstrated in such patient programs as HopeLine (a peer
support phone line), the Renal Teen Prom and the quarterly Live & Give
newsletter written mostly by people who have kidney disease and their family
members.
For more information about these and other programs, visit RSNhope.org, the web
site of the Renal Support Network.
ASN is a not-for-profit organization of 11,000 physicians and scientists
dedicated to the study of nephrology and committed to providing a forum for the
promulgation of information regarding the latest research and clinical findings
on kidney disease. For additional information about ASN, visit its website at
www.asn-online.org.
####
Back to the Future: Returning to Old Ways
of Dialysis—With Improvements, of Course!
RSN
Uploads New KidneyTalk Show
Glendale, California (November 4, 2008)— The current movement towards
home hemodialysis and longer hours dialyzing is like moving toward the
future by looking back as Michael Paget, who has been in the renal
community for thirty years, reminisces about dialysis and dialysis
machines in 1970s England. Home hemo and overnight dialysis were the
norm in this country with socialized medicine. Mike, an electrical
engineer by training and education, became fascinated by dialysis
machines and equipment and for many years looked to their service and
maintenance in London. Mike tells some fascinating stories about the
early treatment modalities along with a description of the English
version of “Universal Healthcare”—a contemporary issue today,
particularly on Election Day when this latest show is uploaded.
Kidney Talk is pod cast bi-weekly on Tuesdays and is available at
RSNhope.org and on iTunes. All shows are archived for easy access and
available 24/7. KidneyTalk is hosted by Lori Hartwell, long-time kidney
patient and founder/President of the Renal Support Network, and by
actor/director/producer Stephen Furst, also a kidney patient, who
created the role of the lovable freshman Flounder in “National Lampoon’s
Animal House.”
“What a history to have observed and been a part of,” Paget reflects.
“I’m happy to have the opportunity on KidneyTalk to share some early
history and philosophy of dialysis with those who may not know that home
hemo and overnight dialysis were normal then. Today there is a push to
return to the convenience of home hemo and longer hours of dialysis to
improve quality of life.”
Paget, Director of Operations for Renal Support Network and Executive
Director of the California Dialysis Council, is widely respected in the
healthcare community for his commitment to education, improved standards
of care and better oversight of the large numbers of dialysis centers.
Streaming Health, Happiness, and Hope over the Internet twenty-four
hours a day, seven days a week, KidneyTalk is the brainchild of Lori
Hartwell, president and founder of the Renal Support Network (RSN) and a
kidney patient for over 38 years. Joining with funny man Stephen Furst
as co-host was another brilliant idea. Together, they are a modern audio
slap-stick comedy routine. What makes this team work is respect for each
other, their guests, kidney disease, and a tremendous sense of humor.
Education, empowerment, and enthusiasm are key components to the show.
Nothing is off limits as the topics run the gamut from tips on dating
(Dating with Kidney Disease: When Do You Tell?) to tips on eating
renal-friendly food (Spicing Up Your Renal Diet and Holiday Eating Tips:
Eat, Drink, and Be Careful) to stepping out of your comfort zone and
traveling while on dialysis (Traveling Around the Globe: Adventures of a
Hemodialysis Patient, Taking Dialysis on the Road).
####
How a Firefighter Fought for his Kidney
New RSN KidneyTalk Show Uploaded
GLENDALE, CA (October 8, 2008)— Interrupting a career of 37 years as
firefighter, fire marshall, and Chief of Emergency Services saving other
people’s lives and possessions, John Garcia found himself locked in a battle
with CKD for his own life. He had nothing but flu symptoms when his doctor
called up and said, “Get to the hospital, your kidneys are failing!” This latest
KidneyTalk show podcast spotlights the story of Garcia’s heroic fight, his
experience with home hemodialysis, and a moving, hopeful tale of family strength
and love, illuminating the roles his son and daughter played as caregiver and
kidney donor.
Kidney Talk is pod cast bi-weekly on Tuesdays and is available at RSNhope.org
and on iTunes. All shows are archived for easy access and available 24/7.
KidneyTalk is hosted by Lori Hartwell, long-time kidney patient and
founder/President of the Renal Support Network, and by actor/director/producer
Stephen Furst, also a kidney patient, who created the role of the lovable
freshman Flounder in “National Lampoon’s Animal House.”
KidneyTalk has addressed a wide range of important topics for patients with
kidney disease, including anemia, secondary hyperparathyroidism/calciphylaxis,
bundling of dialysis services, and the Dialysis Outcomes and Practice Patterns
Study. The shows are available either on CDs or on the RSNhope.org website, and
can be listened to online or downloaded via iTunes to a computer, iPOD, or MP3
player. Because of its topical issues for kidney patients, KidneyTalk appeals to
a large segment of the population that has this chronic illness.
Kidney patient Bill Dant says, “Listening to it is inspiring; I think about the
show afterwards because it makes me feel both better and happier, and like I
want to go back in swinging with what I have learned.”
26 million Americans –1 in 7—has chronic kidney disease and 20 million more are
at risk! Even those who are not diagnosed learn the early warning signs of
chronic kidney disease and can often take action to avoid it.
####
Shedding a Light on Depression
New RSN KidneyTalk Show Uploaded
GLENDALE, CA (September 24, 2008)— Dealing with the stigma, the secrecy, and the
shame of depression as a LCSW, Mark Meier pulls back the curtain on depression
in this latest KidneyTalk podcast to reveal a treatable illness whose symptoms
have been experienced by most people at one time or another. People with
diabetes and kidney disease can tune into this remarkable show to learn more
about depression, what causes it, why diabetes and CKD patients may be more
susceptible to it, and ways to deal with it. Meier draws on 11 years experience
as licensed clinical social worker and administrator of a dialysis facility, and
has another 5 years working for the renal network.
Kidney Talk is pod cast bi-weekly on Tuesdays and is available at RSNhope.org
and on iTunes. All shows are archived for easy access and available 24/7.
KidneyTalk is hosted by Lori Hartwell, long-time kidney patient and
founder/President of the Renal Support Network, and by actor/director/producer
Stephen Furst, also a kidney patient, who created the role of the lovable
freshman Flounder in “National Lampoon’s Animal House.”
Because of its topical issues for kidney patients, KidneyTalk appeals to a large
segment of the population that has this chronic illness. 26 million Americans –1
in 7—has chronic kidney disease and 20 million more are at risk! Even those who
are not diagnosed learn the early warning signs of chronic kidney disease and
can often take action to avoid it. Kidney Talk makes it fun to learn what you
need to know. Kidney patient Kathe LeBeau says, “The best thing about KidneyTalk
is that I am always finding out something I didn’t know before or seeing a new
way to look at things.”
####
For Immediate Release
RSN and NRAA to Launch Sponsorship and Marketing
Collaboration at Fall Conference in Cleveland
Glendale, CA (September 11, 2008)—Getting the word out about The Renal Support
Network’s (RSN) HOPEline call-in support program will become easier this month
when RSN launches a two-year sponsorship/marketing collaboration with the
National Renal Administrators Association (NRAA).
The sponsorship for HOPEline, staffed by people with chronic kidney disease, is
scheduled to launch at the national NRAA Annual Fall Conference in Cleveland,
Ohio, Both organizations hope the collaboration will vastly increase the
dissemination of information about the RSN HOPEline, helping to spread the word
about support services available to people with kidney failure, and their
caregivers. The HOPEline toll-free number is 800-579-1970.
“This is a significant collaboration commitment and has the potential to make a
real difference in the lives of the 26 million people in the US today with
chronic kidney disease,” states Lori Hartwell, President and Founder of the
Renal Support Network. “Many of these people live with a sense of isolation and
have no other patients to talk to,” she continues. “RSN was founded on the
principle that one friend can make a difference, and with the HOPEline, as
patients reach out to share their experience, strength and hope with other
patients, they are healed as well.”
NRAA President, Stan Langhofer says, “NRAA is thrilled to be able to partner
with RSN on this very important service to people with kidney disease. The NRAA
Board of Directors and our national membership strongly believe in RSN; what
Lori and her team are doing is remarkable and we are excited to be a vital part
of the HOPEline for years to come.”
RSN, a non-profit, patient-run organization, offers informative,
patient-directed programs that bring health, happiness and hope into the lives
of others affected by chronic kidney disease, whether in its early stages, on
dialysis or after a kidney transplant. RSN programs include Renal Teen Prom,
Kidney Talk, Kidney Times, KidneySpace, weKAN, HOPEline, PEPP Patient Speakers,
Patient Meetings, Live & Give Newsletter, and much more. RSN strives to help
others develop their personal coping skills, special talents and employability,
by educating and empowering them, as well as their family members, to take
control of the course and management of the disease. The web site,
www.RSNhope.org , contains more detailed information.
The NRAA supports members from all types of providers through the weekly e-mail
newsletter, “Renal Watch”, the Annual Meeting, through ongoing educational
opportunities and lobbying efforts in Congress and at Medicare. NRAA is credible
advocate and resource for all Chronic Kidney Disease (CKD) providers through
legislation, regulation and education.
The NRAA Fall Conference, the largest national convention for administrators and
managers of renal dialysis facilities, will be held September 24 – 26 at the
Renaissance Hotel in downtown Cleveland, Ohio. The conference, which this year
features the new “Conditions for Coverage,” offers unparalleled networking and
educational opportunities for renal administrators, nurse managers, nurses,
medical directors, technicians and financial/billing managers employed by
university, hospital, and freestanding facilities.
Media Contact:
Heidi Lesemann, Renal Support Network, (866) 903-1728 Ext. 105,
heidi@rsnhope.org
The Heart of Kidney Disease--New RSN KidneyTalk
Show Uploaded
GLENDALE, CA (September 9,
2008)— People with chronic kidney disease need to ask, how’s my heart
doing? On the new KidneyTalk show, Nephrologist Carol DiRaimondo, an
internist specializing in kidney diseases, gives some no-nonsense,
straight-as-an-arrow talk about why it’s vitally important for people
with kidney disease to take care of their heart—and how to do it.
Because patients on dialysis are at a higher risk of heart disease, they
will be especially empowered by this discussion. Find out what can be
done to prevent heart disease --or to work towards a healthy heart-- in
this information-packed show.
Kidney Talk is pod cast bi-weekly on Tuesdays and is available at
RSNhope.org and on iTunes. All shows are archived for easy access and
available 24/7. KidneyTalk is hosted by Lori Hartwell, long-time kidney
patient and founder/President of the Renal Support Network, and by
actor/director/producer Stephen Furst, also a kidney patient, who
created the role of the lovable freshman Flounder in “National Lampoon’s
Animal House.”
Because of its topical issues for kidney patients, KidneyTalk appeals to
a large segment of the population that has this chronic illness. 26
million Americans –1 in 7—has chronic kidney disease and 20 million more
are at risk! Even those who are not diagnosed learn the early warning
signs of chronic kidney disease and can often take action to avoid it.
Kidney Talk makes it fun to learn what you need to know. Bill Dant,
kidney patient, says, “as I listen each week I get energized to face
whatever the next week is going to bring.”
###
ABOUT RSN:
Renal Support Network (RSN), a non-profit, patient-run organization,
offers informative, often entertaining patient-directed programs that
bring health, happiness and hope into the lives of others affected by
chronic kidney disease, whether in its early stages, on dialysis or
after a kidney transplant. Visit www.RSNhope.org for more information.
Dear Kidney Organization or
Healthcare Professional...
Help send a young kidney patient to the RSN Renal Teen
Prom on January 18, 2009. Hold a fundraiser or sponsor a teen (or two!).
If you do, you can use the following press release to let your local media
(newspapers, TV, radio) know of your generosity. Just fill in the correct
information, modify it any way you want, and you’re set to go!
YOUR ORGANIZATION Sends
Young Kidney Patient to California Prom
YOUR ORGANIZATION is
proud to be sponsoring a “kidney teen” on a trip to Southern California in
January to attend a special prom for young people with kidney disease.
PATIENT’S NAME from CITY will be going to the 10th
Annual Renal Teen Prom (renal is another word for kidney), which has been staged
in the Los Angeles area for the past nine years by the Renal Support Network, a
nonprofit, patient-run organization that instills “health, happiness, and hope”
into the lives of kidney patients and their families.
“Somewhere Over the Rainbow” is the theme of the upcoming RSN Renal Teen Prom,
to be held January 14, 2007, on the campus of Notre Dame High School in Sherman
Oaks, Calif.
The prom is a free event set in the style of a senior prom. More than 400
“kidney teens” (ages 14-24), their guests, and volunteers from throughout the
region attend the prom, with patients now attending from across the United
States.
The young people are treated to an elegant night of dancing and entertainment,
dinner and hors d’oeuvres, limousine rides, glamour photos, and special
appearances by Hollywood celebrities who sign autographs and mingle with the
guests. They also are given the chance to discover that one friend can make a
difference!
RSN’s Renal Teen Prom gives young kidney patients the opportunity to interact
with each other and share experiences in a fun setting.
Although a single night cannot make up for all the lost experiences that young
kidney patients encounter, it does show them, some for the first time, that they
can live a fulfilling, successful life despite their problems. One of the key
ingredients for living that life is to connect with others who understand what
they’re going through. What better place to do it than among the stars?
The prom has become one of Southern California’s most inspirational news
stories, with live telecasts appearing throughout the night on Los Angeles-area
TV stations. A special on the prom was featured on cable’s Lifetime Television,
and a young girl who attended the prom wrote about her experience in Teen
Magazine.
PATIENT’S NAME was selected to attend the prom because of
TELL STORY...
For more information on RSN’s Renal Teen Prom and to view photos from past
proms, visit www.RSNhope.org. All kidney patients (pre-dialysis, on dialysis, or
with a transplant) between the ages of 14 and 24 are invited and can bring a
guest. To receive an invitation to the prom, contact RSN at (866) 903-1728 or
info@RSNhope.org, or contact YOUR ORGANIZATION at CONTACT INFORMATION for more information.
Kidney disease is more common than many might think and affects people of all
ages. If left unchecked, the kidneys stop working altogether. The person then
needs kidney dialysis (a blood-cleansing treatment) or a kidney transplant. More
than 400,000 people in the U.S. are on dialysis. and about 95,000 are waiting
for a transplant.
GIVE DESCRIPTION OF YOUR ORGANIZATION AND ITS ROLE IN THE KIDNEY COMMUNITY.
To help support YOUR ORGANIZATION in sending a teen to the prom, donations are welcome
and can be sent to CONTACT INFORMATION.
####
NASCAR Angels Help RSN
Watch Renal Support Network on
You may have read about it in the
Spring issue of Live & Give: It all started with the Renal Teen Prom,
which is organized by the Renal Support Network. The Prom tends to attract
the media, and last year it attracted NASCAR Angels who wanted to do a car
makeover for one of RSN's prom volunteers and then put the makeover on
television! Rhonda gave up her Honda for a long-overdue "lift" from inside
to out.
Hosted by former NASCAR NEXTEL Cup Series Champion
and current ABC/ESPN broadcaster Rusty Wallace and NASCAR.com reporter Shannon
Wiseman, “NASCAR Angels” hits the road each week with a different NASCAR driver
and the Angel Automotive Technicians to help families and communities with their
transportation needs. The half-hour, weekly syndicated television series,
which is presented by Goodyear Gemini Automotive Care, goes on location in major
NASCAR race markets. The show features top NASCAR drivers and crew chiefs giving
deserving families the chance to go behind-the-scenes to meet their heroes and
get an up-close-and-personal glimpse into the NASCAR experience while their car
is fixed.
The makeover took a few days as the NASCAR mechanics worked on Rhonda's car. In
the meantime, co-host Shannon Wiseman asked Lori Hartwell, Founder and President
of RSN, to take her through a dialysis clinic explaining that the two main
reasons people go on dialysis is hypertension and diabetes. Shannon met patients
and learned about dialysis, all recorded by the TV crew.
By the time the car was ready for the unveiling, Rhonda had unfortunately become
ill a few days before and couldn't attend. Knowing they could interview Rhonda
later for her reaction, the show's unveiling went on as planned--with an extra
surprise: a shiny Ford Econoline passenger van rolled out with RSN's purple logo
freshly painted on the doors!
“NASCAR Angels” complements the consumer
education efforts of the automotive industry’s “Be Car Care Aware” campaign and
the Fall release of its new Car Care Guide – a first-of-its-kind reference guide
for motorists which covers typical service occasions and major components,
systems and parts with service interval recommendations, a maintenance log and
more.
You won't want to miss this extraordinary show. Please check the listings in
your area for NASCAR Angels, or visit the
NASCAR Angels web
site.
Photos of Reveal and Dialysis Visit
RSN’s KidneyTalk! Halloween Special
What Scares You About Kidney Disease?
October 24, 2006
KidneyTalk! is an online radio talk show blending
humor, insight, and information on living life to its fullest in spite
of kidney disease.
For the week of Oct. 24 (the Halloween show), find out what scares
kidney patients the most and learn about renal-friendly Halloween
treats. Click
here to listen to the show.
KidneyTalk! is co-hosted by Lori Hartwell, president of the Renal
Support Network, and Stephen Furst, a TV and movie
actor/producer/director who recently began dialysis. A new half-hour
show is uploaded to RSNhope.org every Tuesday. Each new show is
available online 24/7 for an entire week (also available as a podcast),
and past shows are archived on the website.
KidneyTalk! has become the “talk of the town,” and now you have another
way to listen to the shows. The first 10 shows have been combined into a
collection and burned onto CD for convenient listening at home, in your
car, or at your dialysis or transplant center. The KidneyTalk! CD (Vol.
1) features:
• Jodi Picoult - Best Selling Author
• Dating with Kidney Disease, and When Do You Tell?
• Peter Quaife - Rock Star
• Traveling Around the Globe: Adventures of a Hemodialysis Patient
• Independent Living with Home Dialysis
• Choosing and Caring for Your Vascular Access
• Laughing Through the Illness (Howie Mandel)
• For the Love of Pets
• Dialysis Success
• Taking Dialysis on the Road
You can order the KidneyTalk! CD (Vol. 1) from the RSN website by
clicking
here.
KidneyTalk! is made possible by Amgen (founding sponsor), Roche,
Astellas, Abbott, American Regent, and Fresenius Medical Care North
America
ABOUT RSN
RSN was founded in 1993 by Lori Hartwell, a longtime kidney disease
survivor, to instill health, happiness, and hope into the lives of
others affected by chronic kidney disease. RSN is a nonprofit,
patient-focused, patient-run organization that strives to help patients
develop their personal coping skills, special talents, and employability
by educating and empowering them, as well as their family members, to
take control of the course and management of the disease. “An illness is
too demanding when you don’t have hope!”
RSN Brings “Health, Happiness & Hope” to Philly
July 10, 2006
RSN National Patient Meeting, In Brief
October 5-7, 2006: 3rd Annual Renal Support Network (RSN) National Patient Meeting, “Health,
Happiness & Hope.” Philadelphia Marriott Downtown, Philadelphia, PA. Focus
is on educating people with chronic kidney disease (whether pre-dialysis, on
dialysis, or with a kidney transplant) and their family members, providing
hope for a better tomorrow, and inspiring patients to achieve their dreams.
Held in conjunction with the annual meeting of the National Renal
Administrators Association (NRAA), making it the only patient-professional
convention of its kind. Keynote address from TV and movie
actor/producer/director Stephen Furst, who recently started dialysis.
Featured are “patients helping patients” sessions. Download meeting brochure
at www.RSNhope.org. To receive brochure by mail, contact RSN at 1311 N.
Maryland Ave., Glendale, CA 91207; (818) 543-0896; or
email us.
LOS ANGELES...Celebrate Ben Franklin’s 300th birthday in the City of Brotherly Love
as the Renal Support Network (RSN) holds its 3rd Annual National Patient
Meeting, “Health, Happiness & Hope,” in Philadelphia, October 5-7. The meeting is open to pre-dialysis and dialysis
patients, kidney transplant recipients, and family members.
Health, Happiness & Hope is a showcase of RSN’s efforts to
educate patients and their families about chronic kidney disease (CKD). In doing
so, the meeting provides patients with hope for a better tomorrow and
inspiration to achieve their dreams. Featured are “patients helping patients”
sessions presented by those who know what it’s like to live with a chronic
illness. Rounding out the agenda will be presentations from healthcare
professionals whose objective is to help kidney patients lead healthier and more
joyful lives. Attendees also have the chance to socialize with patients from
around the country and forge long-lasting friendships.
Based on the success of its last two national meetings, RSN
will again hold Health, Happiness & Hope in conjunction with the annual meeting
of the National Renal Administrators Association (NRAA). This union of
healthcare professionals, patients, and family members has proven to be a
successful mix, as it lets everyone see kidney disease from each other’s
perspective, and does so in a casual, non-medical setting. It is the only
patient-professional convention of its kind.
The Keynote Address, “From Sound Stage to End-Stage,” will be
presented by TV and movie actor/producer/director Stephen Furst (best known for
his roles in “Animal House,” “St. Elsewhere,” and “Babylon 5”), who will share
the story of his life and triumphs over diabetes and now CKD.
RSN is excited about several new special events that have
been added to this year’s lineup:
Patient Poster Session, at which
patients will display tips, advice, and thoughts to help others with CKD lead
happy and productive lives.
The Game Show, hosted by Stephen Furst, during which patient-contestants will share their knowledge about CKD and
vie for prizes.
Community Involvement Workshop, showing patients how to spread the word about kidney-related health and
lifestyle issues and how to make a difference in the world, starting in one’s
own backyard. Workshop will be led by Lori Hartwell, RSN president & founder,
and by patient activists from RSN’s Wellness & Education Kidney Advocacy Network
(weKAN).
Patients Educating Patients & Professionals (PEPP)
sessions, delivered by specially trained patient-speakers. Who better to hear
about living with a chronic illness than from someone who’s “been there, done
that”
For more information about RSN’s 3rd Annual National Patient
Meeting or to register, download the meeting brochure at www.RSNhope.org, or
contact RSN at 818/543-0896; info@RSNhope.org.
About RSN
The Renal Support Network was founded in 1993 by a long-term kidney
disease survivor (38 years and counting) to instill health, happiness, and hope
into the lives of others affected by chronic kidney disease,
whether in the early stages of the disease, on dialysis, or with a kidney
transplant. RSN is a nonprofit, patient-focused, patient-run organization that
strives to help patients develop their personal coping skills, special talents,
and employability by educating and empowering them, as well as their family
members, to take control over the course and management of the disease.
weKAN Set Off Fireworks in DC!
July 5, 2006;
"Empowering!" "Powerful!" "Inspiring!"
"Exhilarating!" These were some of the words uttered by weKAN members at
the conclusion of their recent, most successful visit yet to the
nation's capital to educate members of Congress about kidney disease and
drum up continued support for the Kidney Care Quality and Improvement
Act of 2005 (S. 635 and H.R. 1298).
Over the course of only a day and a half, 20 weKAN (Wellness & Education
Kidney Advocacy Network) members attended a record 106 meetings with
legislators and/or their staff, with whom they shared their personal
stories of living with CKD and laid the foundation for ongoing
relationships.
To date, the patients' visits have resulted in nearly two dozen requests
from lawmakers or their staff to visit dialysis facilities, and have
contributed to a growing list of new cosponsors to the bill: Sen.
Barbara Boxer (D-CA), Sen. Mike Crapo (R-ID), Rep. Jim Leach (R-IA),
Rep. Roscoe Bartlett (R-MD), Rep. Cathy McMorris (R-WA), Rep. Jon Porter
(R-NV), Rep. Mike Ross (D-AR), Rep. Peter Defazio (D-OR) and Rep.
Loretta Sanchez (D-CA) so far. The proposed legislation would provide
annual updates to the amount paid to dialysis facilities for providing
the dialysis treatment, as well as education and preventive programs to
help stem the rising tide of those suffering from kidney failure in the
U.S. Additional provisions include education to help people with CKD
better manage their care, increased emphasis on home dialysis, and
standardized training for patient care technicians.
Earlier this year, weKAN patient volunteers and their family members
participated in a series of conferences calls that helped increase their
knowledge about the bill as well as their ability to effectively
communicate with Congress and the media about issues important to CKD
patients. The weKAN patient activists also attended a full day of
training in Washington, DC, before visiting with their legislators,
visits that the patients themselves arranged.
The continuing success of the weKAN visits to Capitol Hill revolves
around a recurring sentiment expressed by legislators: Patients carry
with them a credibility that only someone who has lived with a chronic
illness can bring to the table.
 Stars Shine on KidneyTalk!
Only a month old, and KidneyTalk! is already becoming the
"talk" of the renal community. For those of you who haven't tuned in yet,
KidneyTalk! is an online radio show that can be listened to from the RSN
website, www.RSNhope.org.
Every Tuesday, a new half-hour show is uploaded to the site and is available
24/7. New shows can also be listened to as a podcast, and past shows are
archived on the site, so you can listen to them anytime.
KidneyTalk! features co-hosts Lori Hartwell, RSN president & founder, and
Stephen Furst, a successful TV and movie actor/producer/director who's also a
diabetic and who recently began dialysis. Lori and Stephen speak with an array
of guests ranging from dialysis and transplant patients to Hollywood
celebrities, each of whom provides special insight on living the best life
possible in spite of chronic illness.
KidneyTalk! debuted on June 6 and featured an interview with Jodi Picoult. Jodi
is a household name among the literary set, having risen to the top of the New
York Times Bestseller List with novels such as "The Tenth Circle," "Vanishing
Act," and "My Sister's Keeper." The latter tells the story of a girl brought
into this world to be an exact donor match for her ailing sister. Jodi provides
insight on the personal side of organ donation.
The KidneyTalk! show for the week of June 13 was titled "Dating with Kidney
Disease, and When Do You Tell?" Lori and Stephen spoke with Jenny Huey, a young,
single woman on peritoneal dialysis who has had two kidney transplants, and Mike
Herrera, a 50s-something gentleman who is currently enjoying his first
transplant and is a bit rusty when it comes to dating. Speaking from personal
experience, Lori, Stephen and their guests reassure listeners that a diagnosis
of CKD does not mean that a person cannot enjoy all the pleasures that life has
to offer, including dating and marriage.
For the week of June 20, KidneyTalk! listeners were treated to a
behind-the-scenes look at the life of a famous rock star, as Lori and Stephen
spoke with Peter Quaife, a former member of the British rock group "The Kinks."
To pass the time while on hemodialysis, Peter began drawing cartoons about what
went on at his dialysis clinic. A collection of his cartoons was recently
published under the title "The Lighter Side of Dialysis," and more cartoons are
on their way. Lori and Stephen discuss other creative ways to pass the time
while on hemodialysis.
The KidneyTalk! show for the week of June 27 was titled "Traveling Around the
Globe: Adventures of a Hemodialysis Patient," and featured an interview with
Bill Peckham who has visited 29 countries on five continents since starting
dialysis, dialyzing in 19 of them! From a unit in South Africa with peacocks
adorning the grounds, to a unit overlooking the Great Barrier Reef in Australia,
Bill has taken advantage of the worldwide availability of dialysis facilities,
as well as the worldwide community of dialysis patients who love to travel.
This week, Lori and Stephen are speaking with Hasmik Mouradian, a woman who came
to America 15 years ago to take advantage of the excellent dialysis services
offered in the U.S., and who is now taking advantage of technologies that allow
her to perform hemodialysis in her home. She shares her thoughts on how home
hemodialysis has helped her feel more in control, as well as some of the fears
she faced in taking dialysis home and how she overcame those fears.
To keep posted on upcoming shows--including an interview with comedian Howie
Mandel, host of the TV game show "Deal or No Deal," who discusses how humor can
help you through a chronic illness--be sure to visit RSNhope.org regularly and
click on KidneyTalk! And remember... all past KidneyTalk! shows are archived on
the site. So if you missed a show the first time around, why not listen to it
now?!
KidneyTalk! is interactive, so if you have an idea for a future show or a tip
about living with CKD, we'd love to hear from you. You can leave us a voicemail
toll-free at 866/379-HOPE (4673), or send us an e-mail
. Select voicemails will air on upcoming shows.
Comprehensive Renal Events Calendar Now on RSNhope.org
Looking for something to do? Well, we have you covered. A comprehensive listing of Renal
Events sponsored by RSN and other patient organizations across the country has
been added to the RSN website. These events include Kidney Camps for children,
Kidney Walks, educational programs, and other activities of benefit and interest
to those with chronic kidney disease.
To view RSN's Renal Events Calendar, please visit our website at
www.RSNhope.org and click on "Calendar."
If you have an upcoming patient event that you would like to have included on
RSN's Renal Events Calendar, please call us at 818/543-0896, or
email us.
RSN’s “KidneyTalk!” to Hit the Airwaves in June
May 31, 2006
LOS ANGELES...Making its debut on June 6, KidneyTalk!--an online radio talk
show developed by the Renal Support Network (RSN) for the renal
community--will begin streaming “health, happiness, and hope” over the
Internet.
The co-hosts of this weekly, half-hour show will be RSN President &
Founder Lori Hartwell and Stephen Furst, an accomplished television and
movie actor/producer/director recently diagnosed with end-stage renal
failure and now on dialysis. Furst is best known for his roles as
Flounder in the movie “Animal House,” Dr. Elliot Axelrod in the TV
series “St. Elsewhere,” and Vir Cotto in the TV series “Babylon 5.” Also
a diabetic, Furst is the author of the award-winning book “Confessions
of a Couch Potato (Or, If I’m So Skinny, Why Do I Still Feel Like
Flounder?),” published by the American Diabetes Association, for which
he is a spokesperson.
Every Tuesday at 2:00 p.m. Pacific time, a new show will be uploaded to
the KidneyTalk! webpage--located on the RSN website, RSNhope.org--and
will also be accessible as a podcast. Each show will be available online
24 hours a day, seven days a week; past shows will be archived on the
webpage.
With Hartwell’s 37 years as a renal disease survivor and Furst’s
entertainment credentials, KidneyTalk! will provide practical advice on
living a productive life despite chronic kidney disease (CKD), and will
do so in an informal and entertaining format.
Each show will include at least one guest interview, with guests
selected from among renal patients, non-patient specialists, healthcare
professionals, and renal industry representatives. Included in the mix
of KidneyTalk! shows prepared for its debut are interviews with:
- Jodi Picoult, a
best-selling novelist and author of “My Sister’s Keeper,” the story
of a young woman conceived in order to be a blood cell and tissue
donor to her older sister, but who resists when asked to donate a
kidney.
- Peter Quaife, a former
member of the British rock group “The Kinks,” who began hemodialysis
in 1998. To pass the time, Quaife began drawing cartoons about what
went on at his dialysis clinic. A collection of his cartoons was
recently published under the title “The Lighter Side of Dialysis.”
- Comedian Howie Mandel, host of the TV game show “Deal or No Deal,” on the role of humor and
laughter when living with a chronic illness.
- An expert on the use of pet therapy in healthcare settings, and a nephrologist who discusses the
considerations of pet ownership for the renal patient.
- Two patients who provide
real-life advice on dating in light of the special restrictions of
living with renal disease.
KidneyTalk! will be
interactive, allowing listeners to phone in or e-mail comments about a
particular show or about living with CKD. Listeners also will be invited
to suggest show topics and potential guests. Comments can be
e-mailed
and voicemails can be left at (866) 379-HOPE (4673). Select voicemails
will air on upcoming shows.
About RSN
The Renal Support Network was
founded in 1993 by Lori Hartwell--a kidney disease survivor for the past
37 years--to instill health, happiness, and hope into the lives of those
affected by CKD. The influence of this patient-run organization--which
started out as a local grassroots effort--now extends across America.
RSN’s mission is to identify and meet the non-medical needs of people
affected by CKD, whether they are in the early stages of the disease, on
dialysis, or with a kidney transplant. RSN accomplishes this by
providing service, support, and advocacy to patients and their families,
and by building coalitions within the renal community.
About Stephen Furst
Stephen Furst began his film and television career
28 years ago, starring in National Lampoon’s “Animal House” as the
bumbling and overweight freshman, Flounder. Other feature film acting
credits include “The Dream Team,” with Michael Keaton and Christopher
Lloyd, and “Midnight Madness,” with Michael J. Fox. He co-starred in the
comedy “Sorority Boys” and in the film adaptation of Stephen King’s
“Autopsy Room 4.”
Furst’s television credits include roles on a number of Emmy
Award-winning series such as the medical drama “St. Elsewhere” and the
apocalyptic mini-series “The Day After,” in which he co-starred with
Jason Robards and John Lithgow. As a voice-over artist, Furst starred in
the animated film “Little Mermaid II: Return to the Sea” and in the
animated series “Buzz Lightyear of Star Command,” with Tim Allen.
In 1994, Furst wrote, directed, and starred in the HBO family film “The
Magic Kid.” He starred in the sci-fi TV series “Babylon 5” and directed
a number of episodes, as well as the live-action musical feature “Baby
Huey’s Great Easter Adventure,” for which he won the Director’s Gold
Award at the Santa Clarita International Film Festival. His film “Dragon
Storm” was the most-watched original two-hour movie in the history of
the Sci-Fi Channel. One of his latest TV movie projects, “Path of
Destruction”--a story about nanotechnology gone wrong--premiered on the
Sci-Fi Channel in March 2005.
As a producer, Furst is in development for the adaptation of the
best-selling novel “My Sister’s Keeper” (a drama about a young woman who
needs a kidney transplant, and the reluctance of her sister to be a
donor). He also is producing a feature film based on another
best-selling novel, “Keeping Faith,” for Lifetime Television. Furst is
in pre-production as a producer on the romantic comedy “Christmas in
Boston” for ABC Family.
Furst is a spokesperson for the American Diabetes Association, to which
he donates the proceeds from sales of his celebrity photos. He has
worked extensively with the Association, writing, producing, directing,
and starring in an inspirational comedy video, “Diabetes for Guys,”
which is based on his life and demonstrates the benefits of sensible
diabetes management. He also was the national spokesperson for the
American Heart Association during their campaign, “The Heart of
Diabetes,” designed to bring awareness of cardiovascular disease to
those with diabetes.
RSN Launches Redesigned Website!
April 19, 2006
Yesterday was a momentous day in the life of
the Renal Support Network as its redesigned website, www.RSNhope.org, went
live.
After months of preparation, RSNhope.org is a reflection of the many
services and programs, and wealth of information, now available to
kidney patients through RSN.
As you tour the home page, please note the “Patient Action Center,”
replete with sections for living a healthy life and connecting with
others who know what you’re going through and the best ways to go about
doing it. You’ll find information about RSN’s “Live & Give” newsletter,
preparing renal-friendly meals, attending patient meetings, scheduling a
patient-speaker, supporting renal-related legislation, how to write for
RSN, and much more.
From the home page you can also view descriptions of RSN’s programs and
learn how you can take part--from becoming a patient “activist” to
dancing the night away at the RSN Renal Teen Prom. Visit “Marketplace”
to find the latest products and books geared specifically toward renal
patients, the “Health Info” library where you can find answers to just
about all of your kidney-related questions, the “Resources” section with
links to kidney-related organizations around the country, and the
“Calendar” section with the latest updates on what’s going on in the
renal community. RSN is offering everyone in the renal community the
opportunity to list their upcoming patient meetings in the Calendar
section at no charge.
Of special interest on the home page is the link to RSN’s “KidneyTalk!”
This brand-new program is sure to generate a lot of buzz in the renal
community (see story below).
 Don’t Touch That Dial!
As you tour the newly redesigned RSN
website, www.RSNhope.org, you’ll see something rather
unique--“KidneyTalk!” Beginning on June 6, KidneyTalk!--an online radio
talk show developed by RSN for the renal community--will begin streaming
“health, happiness, and hope” over the Internet.
The co-hosts of this weekly, half-hour show will be RSN President &
Founder Lori Hartwell and Stephen Furst, an accomplished television and
movie actor/producer/director recently diagnosed with end-stage renal
failure and now on dialysis. Stephen is best known for his roles as
Flounder in the movie "Animal House," Dr. Elliot Axelrod in the TV
series "St. Elsewhere," and Vir Cotto in the TV series "Babylon 5."
Every Tuesday at 2:00 p.m. Pacific time, a new show will be uploaded to
the KidneyTalk! webpage--located on RSNhope.org--and will also be
accessible as a podcast. Each show will be available online 24 hours a
day, seven days a week and will include at least one guest interview.
Guests will be selected from among renal patients, non-patient
specialists, healthcare professionals, and renal industry
representatives and will include special celebrity interviews.
Visit RSNhope.org now to listen to a KidneyTalk! introduction and to
view our slate of upcoming show topics and guests (which include
comedian Howie Mandel and best-selling novelist Jodi Picoult). You can
also sign up for a KidneyTalk! podcast and e-mail alert.
KidneyTalk! is interactive, so if you have an idea for a future show or
guest, or just have a general comment about living with CKD, we’d love
to hear from you. You can send us an
e-mail or leave us a voicemail at
(800) 376-4673 (HOPE). Select voicemails
will air on upcoming shows. We look forward to hearing from you.
Kaiser Permanente and RSN to
Hold Joint Meeting in May
We are pleased and excited to announce that
RSN will be partnering with Kaiser Permanente, Southern California
Region, to hold a joint meeting for renal patients and healthcare
professionals. RSN has developed the agenda for the patient-directed
segment of this unprecedented meeting--titled
“Unlocking the Secrets to Health with Kidney
Disease”--to be held May 20 in
Anaheim, CA, at Disney’s Grand Californian Hotel. The meeting is
free and open to all
kidney patients, who can bring along a guest at no charge.
“Unlocking the Secrets” will feature patient-speakers William (“Bill”)
Dant and Rhonda Brooks, both members of RSN’s PEPP (Patients Educating
Patients & Professionals) program.
Bill has been a kidney patient since 1977 and, as such, has accumulated
vast knowledge on how to live well with kidney disease. “I view healthy
living as a wonderful gift and see each day as an opportunity to learn
and do new things,” says Bill. “By taking charge of my health, it has
allowed me the ability to still pursue my dreams.” my health, it has
allowed me the ability to still pursue my dreams.”
Rhonda has lived with kidney disease for more than 17 years and has
dedicated herself to helping fellow patients know that they can
experience all that life has to offer. “I love to help patients find the
tools and resources they need in order to educate themselves and make
good decisions about their healthcare,” says Rhonda, who is the
quintessential example of being a strong self-advocate.
In addition to the educational presentations, patient attendees at the
RSN-Kaiser Permanente joint meeting (which we hope will evolve into an
annual event) will be treated to a renal-friendly lunch and
refreshments. During the scheduled breaks, patients will have the
opportunity to visit Kaiser Permanente's Exhibit Hall where they can
speak with representatives from companies and associations involved in
renal care who will provide updates on the latest equipment,
pharmaceuticals, and patient resources.
To register for the meeting, please phone RSN at (818) 543-0896,
e-mail us
or download the program at www.RSNhope.org. If you would like to
schedule a PEPP speaker for an upcoming patient or professional meeting,
please visit our website or call Lori Hartwell at the number shown
above. Let’s add a little “PEPP” to the renal community!
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UPDATES
SAVE THE DATE (12/2/2011)
RENAL SUPPORT NETWORK HOSTS 13th ANNUAL RENAL TEEN PROM
FOR HUNDREDS WITH KIDNEY DISEASE
SUNDAY, JANUARY 15, 2012
NO KIDNEY LEFT BEHIND (11/1/2011)
A Conversation About A New Bill Introduced in Congress. Congressman Burgess explains why this bill is good policy and a necessity, to save Medicare money and to save patient lives.
RENAL SUPPORT NETWORK ANNOUNCES NINTH ANNUAL KIDNEYTIMES ESSAY CONTEST WINNERS (9/15/2011)
"What hobby helps improve your quality of life and helps you forget the many challenges kidney disease presents?" was the theme of Renal Support Network's (RSN) Ninth Annual KidneyTimes Essay Contest, which had only one qualification for entry - to have been diagnosed with chronic kidney disease.
JACK BLACK JOINS OTHER CELEBRITIES IN GOING ALL-IN TO WIN FOR HOPE (9/13/2011)
Actor/comedian, Jack Black and a host of celebrities will 'ante-up' at the "All-In to Win for Hope" No Limit Texas Hold'em Celebrity Poker Tournament on Saturday, October 29, 2011 at Commerce Casino in Commerce, California benefiting Renal Support Network and Love Across the Ocean charities. The celebrity poker tournament will award cash prizes.
Las Vegas Kidney Educational Meeting Enjoys Success (7/14/2011)
Renal Support Network Educates Patients to be Their Own Advocates Via Regional Patient Lifestyle Meetings
>>
Archived News
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