Prevent Kidney Disease
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Traci is a living donor. Her husband Matt is a living donor. Their son, Tanner, is the recipient.
Traci has a unique perspective on organ donation. Nearly nine years ago her son, Tanner, was born with malformed kidneys. Since then, she has spent a considerable amount of time using the National Kidney Foundation's resources to educate her family and herself about kidney disease, transplantation and dialysis.
On April 11, 2007 her husband Matt donated his kidney to Tanner. Not only was Traci the primary caregiver to the recipient; but she was also the primary care giver to the donor. Tragically, 16 months post-transplant, her son lost the kidney, not to rejection but due to another complication. Traci stood by her husband's side as he questioned the loss of his son's organ, his organ. It was a difficult healing process, one they still have difficulty understanding today.
Tanner spent the next four months on dialysis. On December 8, 2008, Tanner received his second kidney. This time, Traci was his donor. It has been more than a year since Tanner's second transplant and the family has once again settled into a comfortable routine. Through their experience, they have a new outlook on the world and a greater appreciation of their son, their lives and how they can impact the world.
Their experiences have driven Traci to be an advocate for living donors. Traci knows both the good and the bad that can accompany living donation. Physically, her recovery was easy, but she found tremendous challenges in addressing her emotional needs. She wants to address depression and psychological issues in living donors and make sure that there is a support system in place for those who need it.
For many years, Traci utilized many resources that the NKF had to offer, and last year her family started to give back to the NKF. They participated in a promotional advertisement for the local NKF and created a team for the Kidney Walk.
Traci has a B.S. in Education from SUNY Fredonia and an M.S. in Special Education from SUNY Geneseo. She has been teaching in public schools since 1991. She currently teaches 2nd and 3rd grade at Letchworth Central School District in Gainesville, NY.
Megan Lewis donated a kidney to her sister Diane in January 2005. She works as a public health researcher for a not-for-profit research organization. She served as the first living donor on the United Network for Organ Sharing (UNOS) Patient Affairs Committee (PAC), and as the PAC representative to the Paired Kidney Donation (PKD) committee, and the PKD education subcommittee. She has also volunteered as part of the speaker's bureau for her local Organ Procurement Organization.
Megan participated in NKF's advocacy efforts in April 2009 in Washington DC. She has participated in NKF walk-a-thons since 2008. She is interested in providing better data and research about living donation to improve informed consent and donor follow-up.
When not working or volunteering, she enjoys cooking, doing yoga, and just hanging out with her husband Bryan and step-daughter Emily.
Atlanta mom and attorney Kathie McClure's first encounter with chronic kidney disease was in May, 2008, when she read in the Atlanta newspaper that Dan Krinsky, chef-owner of her neighborhood restaurant, had polycystic kidney disease and needed a transplant. A few days later when Kathie ran into Dan, looking terribly ill, she told him on the spot that he could have her kidney. Their date in the operating room was August 28, 2009, and Dan is enjoying his new lease on life.
Although Kathie knew little about kidney disease before becoming a donor, she knows quite a bit about chronic illness. Kathie's son, Chris, 28, has Type I Diabetes, and daughter, Caitlin, 25, has epilepsy. After years of struggling to keep good insurance coverage, Kathie founded the nonprofit, VoteHealthcare.org, dedicated to achieving quality, affordable health care for every American. Kathie has traveled the country in a little purple bus working with local nonprofits to educate citizens about our nation's health care crisis so that they can be informed participants in the national debate.
Kathie is interested in advancing the NKF's END THE WAIT initiative, particularly the recommendations related to donor insurance, cost issues, data collection, and study of donor outcomes.
In 2005, Cynthia learned that her mother had chronic kidney failure that was slowly progressing to End-stage Renal Disease (ESRD). It was also her introduction to how hypertension (chronic high blood pressure) could lead to permanent kidney damage. Cynthia, along with eight siblings, was tested; only two were matches, and only one was healthy enough to donate. After two months on dialysis, Cynthia gave her mother the gift of life on January 25, 2006, and says that "I often find myself amazed at the fact that my mom has a piece of me in her."
When her mother was diagnosed with ESRD, Cynthia was an executive at the U.S. Postal Service managing the national community relations programs, including the "Delivering the Gift of Life" program with The Marrow Foundation and National Marrow Donor Program, which made the experience of helping to save a life even more personal with her mother's illness. She also managed several other cause-related corporate programs supporting the United Way, Feeding America Food Bank Network, the National Center for Missing & Exploited Children (NCMEC) and an organ donation and education alliance with the U.S. Department of Health and Human Services.
Cynthia wants to be a "voice for living donors" and use her public relations and public speaking experience to educate and assess needs for families and professionals. She also wants to address legislative issues, medical concerns, and financial support for donors.
Currently, Cynthia is the Principal of Global PR Solutions, LLC, and has nearly 20 years of extensive public relations experience in the areas of corporate and strategic communications, media relations, event planning/management, government relations, community outreach and corporate philanthropy. Cynthia resides in Glen Allen, VA near Richmond where she lives with her husband and 6yearold son. She's a volunteer coach for her son's basketball and soccer teams.
Suzanne Ruff comes from a family that for five generations has been devastated by polycystic kidney disease (PKD). Eight relatives have died from the disease, including her mother. Five different family members have received kidney transplants. One cousin died while waiting for a kidney transplant.
Suzanne is a donor to one of her sisters. While she believes becoming a living donor is a personal choice, her gratitude is profound for those who become organ donors as a result of a sudden or unexpected death. During their worst nightmare, people reached out to save her family. Her mother and another sister each received a kidney transplant from deceased donors.
Suzanne is interested in studying long-term donor outcomes.
A volunteer for the Minnesota Chapter of the PKD Foundation and LifeSource, Suzanne has worked tirelessly to find a cure and better promote organ donation awareness. A new program with LifeSource and the Minnesota Drivers Vehicle Services has been part of her work this past year. She is the author of the book, The Reluctant Donor, which was published in April 2010. The Reluctant Donor was a finalist in the Midwest Book Award (MIPA) in the health category. The book spans sixty-five years of kidney disease in her family, portraying the incredible progress made in the treatment of kidney disease, dialysis, and transplantation. The book will not only inspire anyone diagnosed with kidney disease, but also anyone struggling to understand the miracle of organ donation, or anyone who has struggled and needs a reason to celebrate life. After living in six different cities during their marriage, Suzanne and her husband, Bill, now live in Minnesota.
Michael Sauls has lived and worked in the Washington, DC area for 30 years in various positions related to government relations. Originally from Florida, Michael worked as a Legislative Assistant to a Member of Congress, Subcommittee Staff Director in the US Senate, and as a political appointee in the Executive Branch of the federal government.
He currently is Senior Vice President of John Dudinsky & Associates, a government and business relations firm in Washington, DC., representing a number of various domestic and international clients.
Michael donated a kidney to his brother, Tim, seven years ago and has been involved with the National Kidney Foundation since that time, currently serving as Vice Chairman of Operations of the National Kidney Foundation of the Capitol Area. He is interested in removing obstacles to living donation.
Matthew Cooper is Director of Kidney and Pancreas Transplantation at the Medstar Georgetown Transplant Institute. After receiving his medical degree from the Georgetown University School of Medicine in 1994, Dr. Cooper completed his general surgery training at the Medical College of Wisconsin followed by a fellowship in multi-organ abdominal transplantation in 2002 at the Johns Hopkins Hospital in Baltimore, MD. He joined the transplant faculty at the Johns Hopkins Hospital upon completion of his training, and was appointed Surgical Director of Kidney Transplantation and Clinical Research in 2003. While at Johns Hopkins Hospital, he was instrumental in the success of the division's Incompatible Kidney Transplant Program and the world's first live triple donor kidney exchange in July 2003. Dr. Cooper joined the University of Maryland in 2005 directing the kidney transplant and clinical research program until 2012 when he assumed his current role in Washington, DC.
Dr. Cooper trained with the pioneers of the laparoscopic donor nephrectomy, regularly performs these procedures and seeks new opportunities for living donation while promoting the safety and long-term care of live organ donors. Dr. Cooper is involved in several clinical research projects primarily with an interest in immunosuppression minimization and amelioration of delayed graft function in kidney allografts following ischemic reperfusion injury.
Dr. Cooper is involved in the National Kidney Foundation both locally in the District and on a national basis. He is a member of the Board of Directors for the NKF of DC and a member of the NKF's national End The Wait Task Force and Living Donor Executive Committee. He recently served as the chairman of the United Network of Organ Sharing's (UNOS) Living Donor Committee and currently sits on UNOS' Board of Directors. Dr. Cooper also serves on the Board of the Washington Regional Transplant Community OPO with an effort toward eliminating wastage of deceased donor organs.
Nicole teaches Bioethics at Case Western Reserve University and works in the Center for Biomedical Ethics at MetroHealth Medical Center in Cleveland, Ohio. She has conducted research on motivating integrity in research, determining how physicians discuss issues of uncertainty, and understanding the needs of health care providers, caregivers, and patients with Multiple Sclerosis.
Currently, Nicole is conducting interviews to better understand the living organ donor experience to identify good practices and areas in need of improvement. This is the first step in the journey to understand and address the needs of living donors. Her research interests include the informed consent process, patient/physician communication, professionalism, research regulations and living donor organ transplants.
Rebecca Hays is a transplant social worker at University of Wisconsin Hospital and Clinics. In this role, she helps people sort and sift questions regarding living donation, transplant, and quality of life. She also facilitates a living donor mentor program, in which people thinking about kidney donation can learn more about the experience from past living donors.
Over the years, Rebecca has helped build education for donors and tools for recipients to learn about donation and gain comfort broaching the topic. She has participated in several national consensus conferences to build standards of care for living donors and people with kidney disease. She is currently on the NKF Continuing Medical Education committee and is NKF social work professional education programming chair. In the past, she served as an editor of NKF's Transplant Chronicles newsletter. She has also helped advocate for legislation to offer protections and improved benefits for donors and transplant recipients.
Rebecca has been a kidney social worker since 1999. She trained at University of California at Berkeley and at Johns Hopkins University. She lives in Madison, WI with her family.
Rebecca wants to increase support and quality of information for donors, create best practice recommendations, and reduce financial disincentives. She wants to share her knowledge about psychosocial barriers/outcomes, building mentor programs, and in teaching psychoeducation strategies.