NephCure Press Release
Issued July 2002

Four Kidneys Later, He Sees Hope in New Research Program

Kevin Flesch, who skips lunch so he can duck out for dialysis during his workday in a Chicago law office, now has major allies in his battle against the baffling malady that has destroyed his two native kidneys and two kidney transplants.

The non-profit NephCure Foundation (NCF) today announced an agreement with the federal government on a project to help speed up genetic research into the mysterious kidney filtration problems referred to as Nephrotic Syndrome and FSGS.

"This is an important day for so many of us," said Flesch, 22, whose disease began when he awoke with puffy eyelids at the age of nine. "When you lose kidneys sometimes you lose hope, but this NephCure project makes me want to fight on. More people are joining the cause."

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) will match, dollar-for-dollar, funds raised by NephCure that will allow researchers to obtain DNA samples from hundreds of FSGS patients in upcoming clinical trials. The NIDDK will match up to $300,000 raised by NephCure for a combined total of $600,000.

"This will create a resource of value to all investigators with expertise in the genetics of this disease," NIDDK Director Allen M. Spiegel, M.D., said in a letter to NephCure.

Kidneys can be destroyed by such diseases as diabetes and HIV, but scientists don't know why thousands of otherwise healthy persons suddenly develop Nephrotic Syndrome (NS). In NS, proteins needed by the body instead leak into the urine (proteinuria), cholesterol climbs as high as 600 and swelling (edema) often disfigures the face and legs.

Many youngsters with NS respond successfully to steroids, but in others, the NS can scar the kidney (a condition called FSGS) and eventually require dialysis or transplantation. In some patients, such as Kevin Flesch, even transplants succumb to FSGS.

Kevin lost both kidneys to FSGS in high school and received a transplant from his brother, Matthew. But the disease claimed that kidney and one additional transplant, sending Kevin back on dialysis for the third time. Still, he says, "I've tried to live my life to its full potential and will keep on doing so until the day I die."

Larry Holzman, M.D., the researcher who chairs the NCF's Scientific Advisory Board, said the matching grant program with NIDDK is a crucial supplement to upcoming clinical trials which will study how certain medications fare against FSGS.

"The matching grant program will be the only study of its kind to collect blood, urine and biopsy tissue and screen it for mutations in genes we know can cause problems. This is a major step," said Dr. Holzman.

"Not many realize that losing one's kidney is every bit as serious as cancer. For patients on dialysis, the death rate over time is very high and medical complications requiring hospitalizations are frequent. Our goal is to prevent patients from reaching dialysis and only by better understanding diseases that cause renal failure can we do that."

The NephCure Foundation, a tax-exempt non-profit organization, works primarily to 1/ fund researchers studying non-inflammatory kidney filtration disease to find the cause and cure, and 2/ provide education and support for patients and families.

Flesch's personal story, updates on research in the field, and more details on NCF's fight to save kidneys and lives can be found at www.nephcure.org.