CINNAMINSON, N.J., Nov. 29, 2003 (PRIMEZONE) -- The non-profit foundation fighting the kidney disease suffered by Alonzo Mourning wishes the NBA star a successful transplant but is cautioning the public that neither dialysis nor organ transplant represents a final answer to the serious condition.
"We are praying for Mr. Mourning's future transplant, and we admire his courage," said Brad Stewart, a board member of the NephCure Foundation. "We hope his transplant to eliminate FSGS is as successful as that of another of our NBA heroes, Sean Elliott.
"But we also want the public to know that this is a terrible disease that harms many thousands of young people. And while transplants often are taken for granted, they are not always a slam dunk, as our family knows so well," said Stewart.
Three years ago, Stewart, 45, of Downington, PA, donated a kidney to his daughter, Melanie, 16, who lost her native kidneys to focal segmental glomerulosclerosis (FSGS), the condition plaguing Mourning. But FSGS returned within months to Melanie Stewart's new kidney, which had to be removed.
"Melanie is one of too many cases in which FSGS returns to the transplanted kidney and she is back on dialysis, which people wrongly consider a cure. Believe us, dialysis is not a cure and it is a life fraught with complications," said Stewart. "That's why NephCure's mission is to fund research to cure this disease and make dialysis unnecessary."
Alonzo Mourning, who joined NephCure in testimony before Congress this past spring, announced Monday that he was leaving the game to find a prospective donor for a kidney transplant his doctor says is needed because his FSGS has worsened.
FSGS attacks the tiny filters in the kidney, causing protein to spill into the urine and eventually scar the kidneys, often destroying them. Scientists do not know the cause of the disease that plagues Mourning and thousands of others.
FSGS returns in more than 20 percent of those patients who are transplanted, according to Lawrence B. Holzman, NephCure science board chairman and researcher at the University of Michigan. "Because of our poor present understanding of the biology of FSGS, it is not possible to predict which patients will encounter recurrent FSGS in their transplanted kidney," he said.
Another Michigan researcher and NephCure scientific advisor, William E. Smoyer, M.D., said FSGS can recur "particularly early after losing kidney function." The recurrence may be due to an unknown "circulating factor" or factors in the blood, but scientists have yet to identify exactly the factor.
Said Dr. Smoyer: "We need more research to better understand the cause of the disease in the native kidney and the cause in transplanted kidneys."
In a letter to Congress read by a 12-year-old FSGS patient during NephCure's testimony this Spring, Mourning said: "I urge you to vote to increase funding for research seeking the cause and cure of Nephrotic Syndrome and FSGS, and to help organizations such as the NephCure Foundation to better understand why these conditions strike African-Americans the hardest."
(Information about the testimony and the NephCure Foundation can be found on the web at http://www.nephcure.org. The site includes a "personal stories" section with a report by one FSGS patient who has lost two transplanted kidneys to the disease.)
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) has agreed to match -- dollar for dollar -- funds raised by the NephCure Foundation to be applied toward research into FSGS. Among the NephCure fund-raising programs is a project collecting used cell phones.
"As the one active organization devoted exclusively to defeating this disease, we need to hear from FSGS patients so we can support each other and find research funds needed to cure our young people," said NephCure President Lou Antosh. "The reality is, the more numbers joining in our fight, the more research we can support and the more hope we have."
Information about the NIDDK and NephCure initiatives can be found at http://www.nephcure.org or by calling, toll-free, 1-866-NEPHCURE (637-4287).