Patients Helping Patients: The Renal Support Network
Shari Gilford

“I have a dream.” In 1993, exactly 30 years after Dr. Martin Luther King, Jr. spoke that legendary phrase, Lori Hartwell—who has lived with chronic kidney disease (CKD) for over 38 years—realized her dream and founded the Renal Support Network (RSN). Ms. Hartwell’s dream had always been to connect people who have CKD as well as give them hope and motivation to live an active and fulfilling life. Over the last 13 years, that is exactly what RSN has accomplished.

Many great organizations serve patients with chronic illnesses. RSN stands out among the crowd, however, in that Lori Hartwell is a patient herself, and equips fellow patients to utilize their talents and abilities to help their peers. After all, who is more qualified than a patient to know what patients want and need? Members of RSN’s staff as well as the many RSN volunteers who are actively involved in advocacy, speaking, and community outreach live with CKD. The influence of this patient-run organization, which started out as a Southern California grassroots effort, now extends across the United States.

The Initial Ideas
In the early days of RSN, Ms. Hartwell’s idea was to connect patients because she believed that people on dialysis were dealing with loneliness and a sense of not feeling valued. Her desire to help patients meet others like themselves resulted in a phone directory that serves patients with kidney disease in the Southern California area. The directory includes first names, languages, modalities, and phone numbers of interested patients who can contact one another for support. It has been a big hit among patients in Southern California, and more people sign up to be listed in it each year.

Since Ms. Hartwell began dialysis at a young age, she knows how it feels to miss a lot of activities that most teenagers take for granted. Why not hold a special prom just for teenagers who have kidney disease? A brilliant idea, as the years have proven. In January 2006, over 300 “kidney teens” (ages 14–24) and their guests (some traveling from as far away as Arizona, Texas, and Canada) attended the 7th Annual RSN Renal Teen Prom held in Sherman Oaks, CA.

The Ideas Continue
A patient directory and a prom for teenagers with CKD were only the beginning. RSN continues to develop new programs and services that provide motivation, education, and hope to those affected by CKD.

The most recent addition to the line-up of quality RSN programs is KidneyTalk, an online radio show that blends humor, insight, and useful information on living life to its fullest in spite of kidney disease. Co-hosted by Lori Hartwell and Stephen Furst (a TV and movie actor/producer/director who recently began dialysis), KidneyTalk is aired weekly on RSN’s website, RSNhope.org. All shows are archived on the website, and CDs (mp3 format) of past shows are available to order.

In early 2007, RSN will launch a new website, www.KidneyTimes.org, to serve both patients with kidney disease and healthcare professionals. It will feature patient profiles and an essay contest as well as articles that provide lifestyle tips and education for patients with CKD. It will also include an easily accessible database of medical information on all aspects of kidney disease so that healthcare professionals can provide on-the-spot information to their patients.

A few of the other quality programs and services that RSN offers to patients include:
weKAN (Wellness & Education Kidney Advocacy Network). A national group of patients with kidney disease trained to advocate on behalf of fellow patients by becoming actively involved in the medical, regulatory, and legislative decisions affecting their lives.

weKAN Live & Give Newsletter. A quarterly newsletter written mostly by patients that includes articles on lifestyle issues, legislative news, patient profiles, and other topics that put a positive spin on living with kidney disease.

PEPP (Patients Educating Patients & Professionals). Training for patient-speakers in how to share life-enhancement knowledge with patients and professionals. PEPP speakers are available to give presentations across the United States.

Regional Patient Lifestyle Meetings. Day-long fun and informative events held in various locales across the country, hosted by patients with kidney disease and sponsored by RSN.

More Information
To find out more about RSN, view a calendar of events happening throughout the kidney community, listen to KidneyTalk, read more about RSN’s programs, or sign up to become a member of RSN and receive RSN’s newsletter Live & Give, log onto www.RSNhope.org or call 818-543-0896.

And because “an illness is too demanding when you don’t have hope,” Ms. Hartwell continues to dream!