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.
Senior Management
Mark Stone
Chief Executive Officer
Beth Johnston
Chief Community
Engagement Officer
Ken Kahtava
Chief Operating Officer
Carolyn Lloyd
Chief Development Officer
Michelle Mellion, MD
Medical Advisor
Agnes Mestrich
Chief Financial Officer
Lucienne Ronco, PhD
Chief Science Officer
Board of Directors
Leadership
James A. Chin Sr.
Board Chair
Howard L. Chabner
Vice Chair
George Pollock Jr.
Treasurer
Christine Ford
Secretary
Amy Bekier
Chair, Governance Committee
Jack Gerblick
Chair, Community Engagement Committe
Lee (Frank) Kolakowski
Chair, Therapeutic Accelerator & Research Committee
Stuart Lai
Chair, Patient Engagement Committee
General Members
Robert E. Humphreys, Jr.
Linda Laurello
William R. Lewis III
Michelle Mackay
Marie Morrell
Bruce Ryskamp
William Sarraille
Jason Shi
Neil A. Solomon
William R. Lewis, Sr., MD
Emeritus
