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.
Staff
Jamshid Arjomand, PhD
Jamshid Arjomand is a neuroscientist with more than 15 years of pharmaceutical and biotechnology experience in...
Jess Carter
Jess Carter, Operations Manager, joined the FSHD Society in January 2023. Jess is passionate about animals and recently worked...
Ashley Ferreira
Ashley Ferreira, Regional Director of Volunteer Leaders, joined the FSHD Society in April 2023 after...
Krista Giangregorio
Krista Giangregorio, Director of Operations, joined the FSHD Society in November 2019. Krista graduated from the University of...
Anna Gilmore
Anna Gilmore, Regional Director- Community Engagement, joined the FSHD Society in March 2018...
Beth Johnston
Beth Johnston, Chief Community Engagement Officer, joined the FSHD Society staff in August of 2016 ...
Amanda Hill
Amanda Hill, Director of Research and Patient Engagement, joined the FSHD Society in July 2022...
Ken Kahtava
Ken Kahtava joined the FSHD Society staff in January 2022 after working with us as a consultant, focused on business development strategies...
June Kinoshita
June Kinoshita, Senior Director of Research and Patient Education, joined the FSHD Society in 2012...
Leigh Reynolds
Leigh A. Reynolds, Chief Program Strategy Officer, joined the FSHD Society staff in December 2019 after working with us as a consultant...
Heidi Roy
Heidi Roy, Director of Stewardship & Community Engagement, joined the FSHD Society in January of 2020...
Erin Saxon
Erin Saxon, Digital Marketing Coordinator, joined the FSHD Society in October 2022. Possessing a diverse background as an educator...
Lisa C. Schimmel
Lisa C. Schimmel, Chief Financial Officer, joined the FSHD Society in April 2016. Lisa is a CPA and has a wealth of experience in small to ...
Kim Shanley
Kim Shanley, Manager of Community Engagement & Special Events, joined the FSHD Society in December 2019...
Mark A. Stone
Mark A. Stone has served as an executive leader of research-focused patient advocacy nonprofit organizations since 2004...
Liz Westner
Liz Westner joined the FSHD Society in 2021 after four years managing the database for the Barbara Lee Family Foundation, an organization that...
Board of Directors
James A. Chin Sr.
James A. Chin, Sr., Chair, Chair of Investment Committee, recently retired from the firm of UBS Financial Services in White Plains...
Howard L. Chabner
Howard L. Chabner, Vice Chair, has been a member of the Board of Directors since 2001 and Vice Chairman since 2006.
Ellen Hannan
Ellen Hannan, Treasurer, joined the Board of Directors in 2014 and will co-chair the Society’s annual New York fundraiser ...
Christine Ford
Christine Ford, Secretary, joined the Board in 2016. Chris, a business graduate from California State University, Sacramento, earned
Amy Z. Bekier
Amy Z. Bekier obtained a Master’s degree in Education from Queens College, New York, and was successful in a career as ...
Lee (Frank) Kolakowski
Lee F. (Frank) Kolakowski, PhD. Frank is a Senior Scientist at Tetracore, Inc., a Rockville, Maryland...
Jack Gerblick
Jack Gerblick recently retired after successfully selling the last of three businesses he founded over the...
George Pollock Jr.
George was most recently a co-founder, Director and Chief Financial Officer of vXchnge Holdings LLC...
Stuart Lai
Stuart Lai. Based in New York City, Stuart is partially retired focused now on bringing financial technology to the cloud...
Linda Laurello
Linda Laurello, MBA. Linda is the Chief Financial Officer of Delta Railroad Construction, Inc. and was previously Project Manager ...
William R. Lewis III
William R. Lewis III, MD, is Clinical Professor of Internal Medicine in the Division of Cardiovascular Medicine at the University of California ...
Michelle Mackay
Michelle Mackay joined the Board of Directors in 2010. As an FSHD patient, she is eager to help advance the Society in the U.S. and abroad...
Marie Morrell
Marie Morrell has worked in the aerospace and defense industry since 2003 and currently serves as a Vice President and in-house...
Daniel Paul Perez
Daniel Paul Perez is one of the nation’s leading advocates and experts on living with facioscapulohumeral ...
David Rubin
David Rubin recently retired as Principal with CohnReznick Advisory and is the National Director of Risk and Business Advisory...
Bruce Ryskamp
Bruce Ryskamp received his BA degree from Calvin University, majoring in Economics and Math. He went on to earn his MBA...
Neil A. Solomon
Neil A. Solomon, MD, is a physician, managed care expert and health system innovator. While serving in various physician executive roles ...
William R. Lewis Sr.
William R. Lewis Sr., MD, Chair Emeritus, has been a member of the Board of Directors since 1991 and served as Chairman from ...
Scientific Advisory Board
David Glass
David Glass, MD, is the Vice President of Research at Regeneron Pharmaceuticals, Inc. Prior to joining Regeneron...
David E. Housman
David E. Housman, PhD, is Chairman of the FSHD Society’s Scientific Advisory Board (SAB) and is also Ludwig Professor of Biology ...
Michael R. Altherr
Michael R. Altherr, PhD, received a BS degree in Biological Sciences from the Florida Institute of Technology in 1979 and an MS in 1981 ...
Lee (Frank) Kolakowski
Lee F. (Frank) Kolakowski, PhD. Frank is a Senior Scientist at Tetracore, Inc., a Rockville, Maryland...
Louis Kunkel
Louis M. Kunkel, PhD, is internationally recognized in the field of human genetics and the genetics of muscular dystrophy in particular...
William R. Lewis III
William R. Lewis III, MD, is Clinical Professor of Internal Medicine in the Division of Cardiovascular Medicine at the University of California ...
Katherine D. Mathews
Katherine D. Mathews, MD, is a Pediatric Neurologist and Director of the Child Neurology Clinic at the University of Iowa Hospitals ...
George W.A.M. Padberg
George W.A.M. Padberg, MD, is head of the award-winning Department of Neurology and Chairman of the Neuro Sensory Cluster of ...
Daniel Paul Perez
Daniel Paul Perez is one of the nation’s leading advocates and experts on living with facioscapulohumeral ...