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
![](https://www.fshdsociety.org/wp-content/plugins/bb-plugin/img/pixel.png)
![Mark Mark](https://www.fshdsociety.org/wp-content/uploads/2021/12/Mark.jpg)
Mark Stone
Chief Executive Officer
![Mellion Headshot Mellion Headshot](https://www.fshdsociety.org/wp-content/uploads/2024/05/Mellion-Headshot-150x150.jpg)
Michelle Mellion, MD
Medical Advisor
![Beth Johnston Beth Johnston](https://www.fshdsociety.org/wp-content/uploads/2021/12/Beth-Johnston-1.jpg)
Beth Johnston
Chief Community
Engagement Officer
![Agnes-Mestrich(1) Agnes-Mestrich(1)](https://www.fshdsociety.org/wp-content/uploads/2024/04/Agnes-Mestrich1-150x150.jpg)
Agnes Mestrich
Chief Financial Officer
![Ken-Photo(1) Ken-Photo(1)](https://www.fshdsociety.org/wp-content/uploads/2024/04/Ken-Photo1.jpg)
Ken Kahtava
Chief Operating Officer
![Lucienne Ronco headshot(1) Lucienne Ronco headshot(1)](https://www.fshdsociety.org/wp-content/uploads/2024/04/Lucienne-Ronco-headshot1-150x150.png)
Lucienne Ronco, PhD
Chief Science Officer
![Carolyn-Lloyd-headshot(3) Carolyn-Lloyd-headshot(3)](https://www.fshdsociety.org/wp-content/uploads/2024/04/Carolyn-Lloyd-headshot3.jpg)
Carolyn Lloyd
Chief Development Officer
Board of Directors
Leadership
![James-Chin-photo-1-300x300 James-Chin-photo-1-300x300](https://www.fshdsociety.org/wp-content/uploads/2019/08/James-Chin-photo-1-300x300-150x150.jpg)
James A. Chin Sr.
Board Chair
![Amy-Bekier-2018 Amy Bekier](https://www.fshdsociety.org/wp-content/uploads/2021/02/Amy-Bekier-2018-150x150.jpg)
Amy Bekier
Chair, Governance Committee
![HowardChabner-2014-Crop HowardChabner-2014-Crop](https://www.fshdsociety.org/wp-content/uploads/2019/08/HowardChabner-2014-Crop-150x150.jpg)
Howard L. Chabner
Vice Chair
![Jack Gerblick Jack Gerblick](https://www.fshdsociety.org/wp-content/uploads/2019/07/Jack-Gerblick-150x150.jpg)
Jack Gerblick
Chair, Community Engagement Committe
![GeorgePollock-picture-e1457274910269 GeorgePollock-picture-e1457274910269](https://www.fshdsociety.org/wp-content/uploads/2019/08/GeorgePollock-picture-e1457274910269-150x150.jpg)
George Pollock Jr.
Treasurer
![FrankKolakowski FrankKolakowski](https://www.fshdsociety.org/wp-content/uploads/2019/08/FrankKolakowski-150x150.jpg)
Lee (Frank) Kolakowski
Chair, Therapeutic Accelerator & Research Committee
![ChristineFord-min ChristineFord-min](https://www.fshdsociety.org/wp-content/uploads/2019/08/ChristineFord-min-150x150.jpg)
Christine Ford
Secretary
![Stuart Lai Stuart Lai](https://www.fshdsociety.org/wp-content/uploads/2020/01/Stuart-Lai-150x150.jpg)
Stuart Lai
Chair, Patient Engagement Committee
General Members
![Robert E. Humphreys, Jr. Robert E. Humphreys, Jr.](https://www.fshdsociety.org/wp-content/uploads/2023/07/Humphreys-Bio-Photo-2-1-150x150.jpg)
Robert E. Humphreys, Jr.
![MichelleMackay MichelleMackay](https://www.fshdsociety.org/wp-content/uploads/2019/08/MichelleMackay-150x150.png)
Michelle Mackay
![William Sarraille Headshot William Sarraille Headshot](https://www.fshdsociety.org/wp-content/uploads/2024/06/William-Sarraille-Headshot-150x150.jpg)
William Sarraille
![LindaLaurello-1 LindaLaurello-1](https://www.fshdsociety.org/wp-content/uploads/2019/08/LindaLaurello-1-150x150.jpg)
Linda Laurello
![Marie-Morrell-photo-e1553111854613 Marie Morrell joins the FSHD Board](https://www.fshdsociety.org/wp-content/uploads/2019/03/Marie-Morrell-photo-e1553111854613-150x150.jpg)
Marie Morrell
![R6B_1645-Edit High Res R6B_1645-Edit High Res](https://www.fshdsociety.org/wp-content/uploads/2024/06/R6B_1645-Edit-High-Res-150x150.jpg)
Jason Shi
![BillLewisSr BillLewisSr](https://www.fshdsociety.org/wp-content/uploads/2019/08/BillLewisSr-150x150.jpg)
William R. Lewis, Sr., MD
Emeritus
![SMW13-Story3-DanielPerez-e1390269957215-276x276-min SMW13-Story3-DanielPerez-e1390269957215-276x276-min](https://www.fshdsociety.org/wp-content/uploads/2019/08/SMW13-Story3-DanielPerez-e1390269957215-276x276-min-150x150.jpg)
Daniel Paul Perez, Emeritus
![Neil_Solomon_4x6-2014-e1458097039600 Neil_Solomon_4x6-2014-e1458097039600](https://www.fshdsociety.org/wp-content/uploads/2019/08/Neil_Solomon_4x6-2014-e1458097039600-150x150.jpg)
Neil A. Solomon
![WilliamLewisIII2-276x276 WilliamLewisIII2-276x276](https://www.fshdsociety.org/wp-content/uploads/2019/08/WilliamLewisIII2-276x276-150x150.jpg)
William R. Lewis III
![Bruce Ryskamp2 Bruce Ryskamp - Meet our Team](https://www.fshdsociety.org/wp-content/uploads/2021/01/Bruce-Ryskamp2-150x150.jpg)
Bruce Ryskamp
Scientific Advisory Board
![David Glass headshot David Glass headshot](https://www.fshdsociety.org/wp-content/uploads/2024/05/David-Glass-headshot-150x150.png)
David Glass
Co-Chair
![MichaelAltherr-Cropped MichaelAltherr-Cropped](https://www.fshdsociety.org/wp-content/uploads/2019/08/MichaelAltherr-Cropped-150x150.jpg)
Michael R. Altherr
![WilliamLewisIII2-276x276 WilliamLewisIII2-276x276](https://www.fshdsociety.org/wp-content/uploads/2019/08/WilliamLewisIII2-276x276-150x150.jpg)
William R. Lewis III
![SAB-DavidHouseman-e1390270392782 SAB-DavidHouseman-e1390270392782](https://www.fshdsociety.org/wp-content/uploads/2019/08/SAB-DavidHouseman-e1390270392782-150x150.jpg)
David E. Housman
Co-Chair
![FrankKolakowski FrankKolakowski](https://www.fshdsociety.org/wp-content/uploads/2019/08/FrankKolakowski-150x150.jpg)
Lee (Frank) Kolakowski
![KatheringMathews-Cropped KatheringMathews-Cropped](https://www.fshdsociety.org/wp-content/uploads/2019/08/KatheringMathews-Cropped-150x150.jpg)
Katherine D. Mathews
![SMW13-Story3-DanielPerez-e1390269957215-276x276-min SMW13-Story3-DanielPerez-e1390269957215-276x276-min](https://www.fshdsociety.org/wp-content/uploads/2019/08/SMW13-Story3-DanielPerez-e1390269957215-276x276-min-150x150.jpg)
Daniel Paul Perez
Co-Founder
![SAB-LouKunkel-192x192 SAB-LouKunkel-192x192](https://www.fshdsociety.org/wp-content/uploads/2019/08/SAB-LouKunkel-192x192-150x150.jpg)
Louis Kunkel, PhD
![GeorgePadberg-min GeorgePadberg-min](https://www.fshdsociety.org/wp-content/uploads/2019/08/GeorgePadberg-min-150x150.jpg)