The Future is not a place we are going, but a place we are creating.
First in mind...next in will…then in activity.
The FSHD Society's dedicated staff and committed volunteers bring extraordinary knowledge, expertise, organizational skills, and a great sense of urgency to carrying out our mission. It is the coordinated effort we build with volunteers, patients, family members, healthcare professionals, research leaders, industry, and governments that will lead us to treatments by 2025 and then on to a cure.
Leadership
Mark Stone
Chief Executive Officer
Lucienne Ronco
Chief Science Officer
Beth Johnston
Chief Community
Engagement Officer
Ken Kahtava
Chief Business Officer
Carolyn Lloyd
Chief Development Officer
Agnes Mestrich
Chief Financial Officer
Board of Directors
Leadership
James A. Chin Sr.
Board Chair
Amy Bekier
Chair, Governance Committee
Howard L. Chabner
Vice Chair
Jack Gerblick
Chair, Community Engagement Committe
George Pollock Jr.
Treasurer
Lee (Frank) Kolakowski
Chair, Therapeutic Accelerator & Research Committee
Christine Ford
Secretary
Stuart Lai
Chair, Patient Engagement Committee
General Members
Robert E. Humphreys, Jr.
Michelle Mackay
Neil A. Solomon
Linda Laurello
Marie Morrell
William R. Lewis, Sr., MD
Emeritus
Daniel Paul Perez, Emeritus
William R. Lewis III
Bruce Ryskamp
Scientific Advisory Board
David Glass
Co-Chair
Michael R. Altherr
William R. Lewis III
David E. Housman
Co-Chair
Lee (Frank) Kolakowski
Katherine D. Mathews
Daniel Paul Perez
Co-Founder