FSH Society Board of Directors Names Mark A. Stone as Next Chief Executive Officer

Co-founder and Former CEO Daniel Paul Perez to continue with the FSH Society as Chief Science Officer

Mark Stone

LEXINGTON, Massachusetts – William R. Lewis Sr. M.D., chairman of the Board of Directors of the FSH Society, today announced that Mark A. Stone has been named president and chief executive officer of the 501(c)(3) non-profit after a nationwide search.

“Mark brings with him a successful career in making a difference to patients and families suffering with rare diseases, as well as fine executive leadership skills in nonprofit health care and policy management,” said Lewis. “Mark will certainly help the FSH Society navigate the new challenges of translational research and entering into the business of supporting clinical trials while maintaining a solid basic research platform.”

Stone, a leading executive in health care-related nonprofit organizations has served as an executive leader of research-focused patient advocacy groups for the past 13 years, his most recent assignment being 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. 

“I am looking forward to bringing my experience to the FSH Society. The Society’s track record of success in advancing research initiatives in facioscapulohumeral muscular dystrophy (FSHD) is unmatched, and I am excited about working collaboratively with the founder, our involved and dedicated Board, advisory boards, donors, volunteers and staff to accelerate promising treatments to families impacted by this debilitating disease,” said Stone.

Stone is passionate about helping organizations work to accelerate treatments and cures in diseases that are both rare and of a genetic origin. He 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. Individuals and families impacted by FSHD will remain the FSH Society’s core focus and priority.

“Mark embodies the qualities of a leader of nonprofits and passionate causes – he is visionary, entrepreneurial, and has been instrumental in achieving strong growth. Mark’s experience in strategic planning, implementation and successful fundraising is key at this critical juncture. Mark has compassion, and his empathy is evident. He is an excellent communicator – and this will help FSHD become a known disease. He will be an outstanding CEO of the FSH Society,” said Daniel Paul Perez, co-founder, chief science officer, and outgoing CEO.

Having recently celebrated its 25th anniversary, the FSH Society was founded in 1991 by two researchers with the disease and has grown into a world leader in combating muscular dystrophy. The Society relies entirely on private grants, donations and grassroots philanthropy, and has raised and invested nearly $9 million in research relevant to understanding the molecular genetics and cause of FSHD. The Society organizes an annual symposium for researchers worldwide, patient network meetings, support group meetings, and peer support. This support has helped the Society to write the MD-CARE Act of 2001, which led to the creation of the NIH-funded Wellstone Centers for FSHD research. Importantly, the Society’s vision is to deliver treatments and a cure for FSHD while providing support so that no patient need ever face this disease alone.

About Mark Stone

Stone served as CEO of NephCure Accelerating Cures Institute (NACI), a partnership launched in March 2017 by NephCure Kidney International and the University of Michigan. Based in Philadelphia, NACI is a global clinical trials network and support infrastructure with a 30-plus-site network.  NACI has received financial support from Pfizer’s Centers for Therapeutic Innovation and Retrophin.  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.

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