How A Parents' Quest To Save Their Son Saves Kids Globally

The Heart of Innovation with Kym McNicholas

11-03-2023 • 52 minuti

Society of Vascular Surgery Executive Director Ken Slaw, Ph.D, and his wife Anne Slaw, JD, share their quest to save their son who was diagnosed with a rare, life-threatening, genetic, neurologic disease present at birth. Familial Dysautonomia, abbreviated FD, at the time of diagnosis, had a life expectancy rate of 10 years. That wasn't acceptable to Ken and Anne. Ken reached out to his life-long network of healthcare professionals and attended pediatric conferences in search of researchers while Anne launched FD Now, a 501(c)(3) and started fundraising. They teamed up with Dr. Berish Rubin and Dr. Sylvia Anderson, who through the partnership launched The Laboratory for Familial Dysautonomia Research at Fordham University, New York, which is dedicated to studying the molecular biology of this disease. In addition to the discovery of the gene mutation that causes FD, research at the laboratory has produced numerous life-changing treatment breakthroughs. Listen in to hosts Kym McNicholas and Dr. John Phillips interview Ken and Anne about their story, which they hope will inspire others to not give up hope.

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