Renal Support Network (RSN) wants to congratulate RSN Founder and President Lori Hartwell for leading the non-profit for 30 years. She is featured on the cover of KidneyTalk® magazine, which has a reach of 45,000 readers.
Hartwell understands her peers needs because she herself has been through the many stages of the disease. She suffered kidney failure at the age of 2, survived 50-plus surgeries and was on dialysis for 13 years. She is now living with her fourth kidney transplant.
Hartwell founded RSN to empower people who have kidney disease to become knowledgeable about their illness, proactive in their care, hopeful about their future and make friendships that last a lifetime. “There is very little support available for people who are in the late stages of CKD, dialysis or have a kidney transplant,” Hartwell says. “People with CKD experience a myriad of challenging emotions that living with a chronic illness puts them through, and that’s why we provide them with the educational tools to learn about the illness and let them know they are not alone in their journey and to hang onto hope.
“RSN was a life-saving source for me when I suddenly found myself on dialysis.” says Judy R. “Their zoom gatherings, podcasts and interest groups have answered many questions my doctors don’t have time to discuss, and I learned many tips to make life easier. This group is a must for anyone dealing with chronic kidney disease at any level.
Psychological adaptation to CKD is crucial. People with CKD tend to have higher levels of anxiety and depression than other people, and it is vital that they be offered appropriate resources to help them develop active coping strategies and increase their perceived control.
Another popular program Hartwell created is RSN’s annual Essay Contest that was established in 2002. Since then, thousands of essays have been submitted by people living with CKD. From the first, we knew that we had struck a goldmine of literary talent.
Past essay contest first place winner, Kristin B. said, “Writing an essay about my diagnosis was cathartic for me. Being able to share my story with others is an honor. I am very open about my diagnosis and limitations with everyone. It is a part of who I am, but it does NOT define who I am.”
Lori knew the loneliness she felt as youth and so she wanted to help connect her younger peers, so she came up with a plan in 1999 to host an annual prom just for them. This coming-of-age event is currently planning the 25th year! RSN’s Renal Teen Prom gives youth the opportunity to meet each other and create life-long friendships.
“If it wasn’t for you guys, with all your help and joy. I honestly would not be here. I was suffering from depression along with my kidney disease and to be honest I tried to take my life a few times, but when I went to the Prom, it gave me hope. I always looked forward to getting a beautiful dress, meeting friends, meeting celebrities, and having a great time,” says Sarissa V.
Lori has been the host of KidneyTalk® podcast since 2006. The best thing about an interactive podcast is that the host can ask questions; if a guest says something that is not clear or that would be better served by an expanded explanation, Lori can ask for clarification. Verbal communication can generate a sense of hope.
John H. says, “Treasuring each day that I’m not on dialysis. Love your podcast! It is educational for the days ahead.”
There’s nothing like shared experiences to give people hope and help them feel connected. RSN has a five-day Hope Week National Educational Meeting in October and hosts several Zoom support groups, and more online activities like the Get Creative group and Kidney Kin Fitness classes.
RSN encourages innovation and research and works with the community to provide the patient perspective. RSN also strives to make a lasting and positive difference in the lives of people with kidney disease and ensure that healthcare professionals, regulatory agencies and legislative leaders that serve us hear our needs so that we may have the best care and health possible.
Through RSN’s vast reach, patient engagement programs and prolific library of patient experiences, Hartwell’s mission continues. Hearing another patient’s experience and point of wisdom to live successfully and navigate care is vital for success. “An Illness is too demanding when you do not have hope,” says Lori Hartwell
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The Renal Support Network (RSN) is a nonprofit organization founded by Lori Hartwell in 1993 to empower people who have chronic kidney disease (CKD) to become knowledgeable about their illness, proactive in their care, and hopeful about their future. Their life-enriching programs help families and individuals who live with kidney disease, whether they are experiencing the early stages of the disease, are on dialysis, or are preparing for, or have had a transplant. RSN is the leading organization in engaging people who have kidney disease through its vast reach and prolific library of documented patient experiences. Visit http://www.RSNhope.org to learn more.
