Transplant Life Foundation

By Bill Ryan

Steven Baldridge, R.N. wrote in a recent online article, “In ancient times the kidneys were viewed as the seat of feelings, conscience, and yearnings and the source of morality and ethical activity. The kidneys were associated with the innermost parts of a person’s personality and well-being. While we know now that kidneys have no direct role in shaping our ethics, emotions, and personality, these two bean-shaped organs are nonetheless vital to our well-being.” 

Baldwin’s description both emphasizes the historical misconceptions about kidneys, while posing concerns for millions of people facing kidney disease today throughout the world. Kidney failure, kidney stones, and kidney cancer keep nephrologists across the nation busy, along with thousands of primary care providers, pediatricians, urologists, dialysis technicians, and transplant specialists. The National Kidney Foundation estimates that there are over 30 million people affected by kidney and urologic diseases and that millions more are at risk. 

The Transplant Life Foundation is one of many organizations that understands the tremendous need for support and recognition of one the world’s most devastating chronic diseases. Our foundation’s mission is two-fold in that we seek to provide large-scale public platforms for raising awareness about the needs of millions of kidney patients, while at the same time creating unique opportunities to highlight patients whose lives were changed by transplantation and returned to good health. 

The foundation got its start shortly after taking over the Transplant Games in the United States in 2011. The Transplant Games officially began in 1990 with strong support and funding by Sandoz Pharmaceuticals, a predecessor company to Novartis Pharmaceuticals. Held every two years in America, the Transplant Games of America attract thousands of transplant recipients who attend this festival-style event with two things in mind. Recipients have a strong desire to demonstrate to their families and friends that they have successfully recovered after transplant. Additionally, they want to show the donor families or living donors their gratitude for this amazing gift of life. While the Transplant Games attracts all transplant patients and living donors to compete in 20 competitions over six days, the majority of our athletes are kidney recipients or living kidney donors. 

Throughout the week at the Games, patients and their families meet and interact with donor groups sharing moving stories of medical miracles and giving thanks and tributes to their donors. More importantly, their involvement in such an event with public messaging, provides hope and encouragement to the thousands of chronically ill kidney patients whose return to good health has not yet been completed. The Transplant Games is an emotional and uplifting event that highlights the tremendous accomplishments and successes of medical teams and patients. 

George Franklin, kidney recipient and founder of the Quarter Century Club has attended almost every Transplant Games since the beginning. George received his kidney at the age of 21 after a short illness and has spent the remainder of his life promoting the success of kidney transplantation through his work with the Quarter Century Club. His organization welcomes transplant recipients and donor families who have received or donated their organs over 25 years ago. When asked how the Transplant Games has impacted the world of kidney disease, George replied, “The Games give recipients the opportunity to step onto the national stage and demonstrate to the world how transplantation has dramatically improved their lives. Along with meeting and sharing amazing stories of medical heroism, these patients, through their actions provide hope to many others who are battling chronic kidney disease. Attending the Transplant Games is the one thing I look forward to the most.” 

Forty-two geographically based teams across the country compete in the Transplant Games. Athletes earn gold, silver, and bronze medals in individual sports, all hoping to secure enough medals to win the coveted TGA Team Cup Award. However, George, competing as part of Team Maryland, emphasizes that it’s not about the medals but rather the awareness and support that is created with this nationally recognized event. 

The 2020 Transplant Games will be held July 16-21, 2021 in Northern New Jersey with much of the action at the Meadowlands. Thousands of attendees and fans will regroup after a COVID-19 related delay.  As part of our event, we are planning a world record attempt in hosting the largest number of living donors in one location. 

While the Transplant Games continue to encourage patients to gather to promote and celebrate the gift of life, the Transplant Life Foundation has introduced a new way to reach a broader audience of patients with the creation of TransplantNATION magazine. Published six times a year, TransplantNATION is celebrating its third year of publication.  

In our inaugural issue published in April, 2018, Oliver Hale, better known as Chef O and two-time kidney recipient, shared with readers his very successful diet strategies for maintaining good kidney care during dialysis as well as post-transplant. Chef O has a terrific national reputation, and has traveled the country conducting cooking demonstrations for various groups involved in the care an treatment of kidney patients.  

When asked about his journey with kidney disease and how he has managed a life-long illness with humor and dignity, Chef O said, “I started traveling and competing internationally in 1987, even before the Transplant Games were formally organized. I was part of a small group of recipients who were actively promoting organ donation. Being a role model and showing the world that patients can lead a healthy lifestyle was a strong motivation for me. I work hard to keep a positive attitude knowing it demonstrates to others that it can make the difference in staying healthy and happy.“ Coincidently, Chef O has been a strong competitor and supporter of the Transplant Games. He has competed from the inception of the Games in 1990 and has also been a frequent competitor as part of Team USA in the World Transplant Games. 

TransplantNATION has featured 40 articles on kidney patients over its two years of successful publication. In Susan Walker’s Social Worker Q & A in Volume 2, Issue 2 she shares the psychological issues transplant recipients and living donors face. The American Association of Kidney Patients (AAKP) presented their “Are You O-k+ Campaign” in Volume 2, Issue 4, raising awareness for kidney patients to check their potassium levels. Beaumont Hospital’s (Michigan) Kidney Peer Mentor Program was highlighted in Volume 1, Issue 6 and presented a wonderful review of their program matching mentors with kidney patients awaiting transplant. 

Living Donation in particular, continues to present itself as an opportunity to reduce the waiting times for kidney patients. Stories of hope abound, and articles involving the kidney chain phenomenon, altruistic donations, and tributes to medical heroes who have strived to make a difference in the world of kidney disease, can be found in multiple issues of TransplantNATION 

In summary, TransplantNATION continues to have significant potential to assist kidney patients and their families in managing their disease, and to provide access to information and support that educates on the latest trends in treatments, surgical techniques, legal and regulatory issues. The magazine advances a steady flow of critical information at all levels in the kidney community. 

The Transplant Life Foundation has become a leading advocacy group for transplant recipients, living donors, donor families, transplant professionals, and those awaiting transplant. Going forward, we expect to play a critical role in providing education and support to all patients and their families as they battle kidney disease.  

 

 

Bill Ryan is President & CEO of The Transplant Life Foundation, the nation’s leading advocacy nonprofit for the donation and transplant community.  Bill leads his team in supporting, serving and advocating for transplant recipients, donor families, living donors, future recipients, caregivers and transplant professionals. Transplant Life Foundation collaborates with Donate Life America, American Society of Transplantation, organ procurement organizations, transplant centers and other donation and transplant related organizations to increase awareness of organ, eye and tissue donation. In linking the respective missions of these diverse institutions, the Foundation works to meet the needs of its partners while at the same time, fulfilling its advocacy role. Transplant Life Foundation’s two main initiatives, Transplant Games of America and TransplantNATION magazine, help save lives while actively working to increase the number of individuals on the national and state donor registries.