Our look is new. Our purpose is the same. Learn more about our brand evolution.
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.
Chief Executive Officer
Chief Community Engagement Officer
Chief Operating Officer
Chief Development Officer
Medical Advisor
Chief Financial Officer
Chief Science Officer
Board Chair
Vice Chair
Treasurer
Secretary
Chair, Governance Committee
Chair, Community Engagement Committe
Chair, Therapeutic Accelerator & Research Committee
Chair, Advocacy & Access Committee