Press Releases
Press Release
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.
October 24, 2006
RSN’s KidneyTalk!
Halloween Special
What Scares You
About Kidney Disease?
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!”
July 10, 2006
RSN Brings
“Health, Happiness & Hope” to Philly
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.
July 5, 2006
weKAN Set Off Fireworks in DC!

"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.
May 31, 2006
RSN’s “KidneyTalk!” to Hit the Airwaves in
June

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.
April 19, 2006
RSN Launches Redesigned Website!
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 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.”
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!