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Stopping Alport syndrome

Alport syndrome researcher Clifford Kashtan, M.D.

Gift for clinical trials network may help find effective treatments for children

A member of Al Schuman’s family—“a young man I absolutely adore,” he says—has Alport syndrome, a genetic kidney disease characterized by the progressive loss of kidney function and hearing. Most males who develop Alport experience renal failure in their late teens or twenties. Currently, there’s no proven treatment.

That’s all Schuman, recently retired chairman and CEO of Ecolab, Inc., needed to hear before he started searching the country for Alport syndrome experts.

The search led him to Clifford Kashtan, M.D., at the University of Minnesota. Schuman was impressed with Kashtan’s work involving both humans and animals with the disease. He was equally impressed by Division of Nephrology director Michael Mauer, M.D., an expert in clinical research, and by former pediatrics department chair John Schreiber, M.D., M.P.H.

Schuman, a Floridian who lived in Minnesota for 20 years, was surprised to find this world-class team on his old stomping ground. “What were the chances that the University of Minnesota is one of the few places in the world doing research on Alport?” he asks. “I don’t think even Minnesotans realize how good this institution is.”

Schuman was so impressed that he directed $550,000 through Ecolab to Kashtan’s work. “He’s a very talented guy,” Schuman says. “I found out that his group could do even more if they had a little more funding.”

The money will be used to search for treatments for children through a new, multinational Alport Syndrome Clinical Trials Network.

“Alport syndrome is a relatively unusual disease, so no single center can carry out a treatment trial on its own,” Kashtan says. “Our goal is to organize pediatric nephrology centers in North America into a network that would provide interested families with access to clinical trials. We are fortunate that Mr. Schuman has confidence in our ability to create this network and initiate these clinical trials.”

Schuman is glad to be a part of it, especially if it will make new treatments available to his young family member and other children with Alport syndrome. “If I can help, that’s what I want to do,” he says.

Well-organized clinical trials are critical in developing therapies for Alport syndrome and proving their effectiveness, Kashtan says.

“Although there is satisfaction in conducting research that sheds light on the causes of Alport syndrome,” he adds, “nothing would be more gratifying than the discovery of an effective treatment for the disease.”

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