Our Team

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

  • 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

  • William Sarraille

    Secretary

  • Amy Bekier

    Amy Bekier

    Chair, Governance Committee

  • Jack Gerblick

    Jack Gerblick

    Chair, Community Engagement Committe

  • Lee (Frank) Kolakowski

    Chair, Therapeutic Accelerator & Research Committee

  • Stuart Lai

    Chair, Advocacy & Access Committee

General Members

  • Mel Hayes Fulcrum

    Mel Hayes

  • Robert E. Humphreys, Jr.

  • Linda Laurello

  • William R. Lewis III

  • Michelle Mackay

  • Chris Mancill

  • Bruce Ryskamp - Meet our Team

    Bruce Ryskamp

  • Jason Shi

  • Neil A. Solomon

Emeritus

  • William R. Lewis, Sr., MD Emeritus

  • Daniel Paul Perez, Emeritus