Mark A. Stone

Mark A. Stone has served as an executive leader of research-focused patient advocacy nonprofit organizations since 2004. Prior to joining the FSHD Society, he was the chief executive officer of NephCure Kidney International. During his tenure at NephCure, Stone launched the NephCure Accelerating Cures Institute (NACI), a drug discovery initiative anchored by a clinical trial network comprising more than 35 sites, which seeks to expedite potential treatments for nephrotic syndrome.

Stone was CEO of NephCure Kidney International from 2014 until the launch of NACI. Prior to his work there, Stone served CFIDS Association of America, the largest private funder of research for chronic fatigue syndrome as chief development officer, and the American Association of Physicians of Indian Origin as CEO. From 2004-2011, he was executive vice president and COO of the Polycystic Kidney Disease (PKD) Foundation. Stone has also served as the deputy director of an international relief and development organization and as a pastor within the Nazarene Church.

Passionate about helping organizations work to accelerate treatments and cures in diseases that are both rare and of a genetic origin, Stone has successfully engaged patients, families and friends in raising up an “army of activists” while advocating with pharmaceuticals, the National Institutes of Health (NIH), and the FDA to increase funding levels and enlarge the pipeline of potential therapies.