Meet the Patient and Family Council
Executive Committee Members
Norma Knowles, LCSW
Norma is a clinical social worker who's worked in nephrology for 10 years, and five years in the area of hospice prior to that. She has a long family history of kidney disease due to hereditary FSGS. Norma's father received a living-related transplant from his mother in 1967 which lasted seven years, and her brother had a living related transplant which is still working in it's 12th year. Norma had a living related transplant in 1998 from her cousin, which chronically rejected in 2006. Previously treated with in-center hemodialysis, she is currently on home hemodialysis using NxStage, allowing her to spend more time with her husband and four children. Active with NKF's Council of Nephrology Social Workers and editor for the Journal of Nephrology Social Work, Norma is a strong advocate for promoting patients' quality of life.
Ted retired from Wachovia Bank in Jacksonville, Florida. He is a Commercial Real Estate Banker with a 40 year career making and managing large construction loans.
He started dialysis 22 years ago, and after two kidney transplants he is back on dialysis, using the new NxStage portable and waterless system. Ted has been a member of UNOS since 1997 and worked extensively with recovery agencies to be sure written organ and tissue gifts of the deceased are honored, including writing legislation for various states. Ted spends time one-on-one with other patients in dialysis clinics to encourage and teach, and hopes to expand that outreach through the NKF and to help the NKF in its work.
Celeste Lee, Chairperson
Celeste's multiple memberships in kidney disease organizations keep her busy as an advocate in North Carolina. With memberships with the North Carolina Task Force on Chronic Kidney Disease, the Vasculitis Foundation of NC, and as a public speaker for the Carolina Donor Services, Celeste speaks out on critical issues related to kidney health and outcomes for people on dialysis. She is the Chief of Staff for the President & CEO for Duke University Health Systems, and Chancellor for Health Affairs, Duke University, and serves on the NKF Public Policy Committee. Celeste received a non-living transplant in 1986 which chronically rejected in 1995. She is currently on in-center hemodialysis but was also on peritoneal dialysis for 10 years.
In June of 2001 my family and I knew nothing of kidney disease or kidney transplants. It was a new realm to us. We received a call from the hospital that my older brother Troy, a 37 year healthy man with no history of any illness, was in renal failure. So began the days of total fear, anxiety, and waiting. There were many different doctors, so many different tests. The following months were filled with ups and downs. He began months of dialysis three times a week until a transplant could be done. There was never a question about if I was willing to give him a kidney. The hardest part was the waiting, praying that I was a match and that time was on our side. On May 16th 2002 I was part of a miracle. My life has been blessed every day since. To date my brother continues to do extremely well with our kidney. I have since committed my time to educate others on the importance of early diagnosis and testing, owning your health and organ donation. I am honored to be a member of the Patient and Family Council Executive Committee. I do so with great hope to make a difference in the life of kidney patients and their families.
Healthcare has always been a passion of Melissa's. Her original focus for her passion was on a career in healthcare management, but in March of 2009, that focus and passion became personal. Her 29–year–old sister was diagnosed with End Stage Renal Disease, brought on by IGA nephropathy, in March of 2009. Melissa was tested to be a living donor for her sister and went through the entire evaluation process to find out she was not eligible to be a donor. During the next few months, Melissa was able to observe her sister’s journey through dialysis, ending with a living donor transplant the week of Thanksgiving in 2009. This experience inspired Melissa to become involved in the National Kidney Foundation. She is passionate about advocating for people with kidney disease and is interested in current and future legislative issues that impact these patients. Professionally, Melissa has a Master's in Healthcare Administration, is a certified healthcare executive and is a Fellow in the American College of Healthcare Executives. She currently works for Cardinal Health as a Director of Operations.
My name is Jonathan Swoboda, and I was diagnosed with IgA nephropathy in 2003. I have only recently started peritoneal dialysis, and I am currently awaiting my first transplant. I am a Ph.D. level biochemist currently conducting a postdoctoral research fellowship in sunny San Diego. My research is focused on identifying novel therapies for the treatment of several autoimmune diseases. My eventual goal is to use my scientific training and patient experience to improve the lives of people diagnosed with autoimmune diseases including kidney disease. I am a bit of a squeaky wheel, and I have always been a patient advocate, particularly when it comes to healthcare. I am extremely honored to be a part of the National Kidney Foundation's Patient and Family Council, and I look forward the interesting challenges ahead.
Duane Sunwold, Past Chairman
Chef and culinary instructor for over 25 years, Duane is interested and involved in dietary changes to improve kidney function and quality of life. He has actively volunteered with the National Kidney Foundation on many initiatives for several years now. Based on adherence to his nephrologist's health plan and strict dietary recommendations, Duane has succeeded in improving his kidney function, while maintaining a varied and satisfying diet.
Laura is the Vice President, Sales for eScreen Inc., a company that seeks to improve corporate hiring practices. Now serving her second term on the NKF Patient and Family Council Executive Committee, Laura also serves on the Board of Directors for the Foundation for IgA Nephropathy and is a moderator for a Web site dedicated to providing education and support to patients and family members living with IgA Nephropathy. In her spare time she volunteers for the California Transplant Donor Network and the National Kidney Foundation, Northern California Chapter. She received a kidney transplant in 2005.
To contact a member of the PFC EC send an e-mail to firstname.lastname@example.org.