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.
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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.
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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.”
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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.”

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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  

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.

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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.

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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!