Board of Directors

Mark Stone, FSH Society CEO

Mark A. Stone

Chief Executive Officer

Mark A. Stone has served as an executive leader of research-focused patient advocacy nonprofit organizations for the past 13 years. Prior to joining the FSH Society, he was the chief executive officer of NephCure Kidney International. During his tenure at NephCure, Stone launched the NephCure Accelerating Cures Institute (NACI), a drug discovery initiative anchored by … Read more of “Mark A. Stone” »

Daniel Perez

Daniel Paul Perez

Chief Science Officer and Co-Founder

Daniel Paul Perez is one of the nation’s leading advocates and experts on living with facioscapulohumeral muscular dystrophy (FSHD), FSHD molecular and genetics research, and clinical aspects of the disease. Daniel established the Society in 1987 after meeting fellow FSHD patient and Society co-founder, Stephen Jacobsen. Daniel developed the by-laws of the Society, incorporated the … Read more of “Daniel Paul Perez” »

William R. Lewis Sr., MD, Chair, has been a member of the Board of Directors since 1991 and Chairman since 2006. As a neurological surgeon with more than four decades of experience—and the husband and father of FSHD patients—Dr. Lewis brings his medical expertise and compelling personal interest to his role as Chairman. He is also … Read more of “William R. Lewis Sr.” »

Howard L. Chabner

Vice Chair

Howard L. Chabner, Vice Chair, has been a member of the Board of Directors since 2001 and Vice Chairman since 2006. He was diagnosed with FSHD at age 18, in 1975, and has used a power wheelchair since 1990. Leveraging his 20 years of experience practicing corporate, equipment leasing, and commercial law, Howard provides legal guidance … Read more of “Howard L. Chabner” »

James A. Chin, Sr.

Vice Chair, Chair of Development and Investment Committees

James A. Chin, Sr., Vice Chair, Chair of Development and Investment Committees, recently retired from the firm of UBS Financial Services in White Plains, New York where he was Managing Partner of the Chin-Meador Team and Senior Vice-President. Jim oversees the Society’s investments and also serves as chair of the Board’s Development Committee. Prior to … Read more of “James A. Chin, Sr.” »

Ellen Hannan

Treasurer

Ellen Hannan, Treasurer, joined the Board of Directors in 2014 and will co-chair the Society’s annual New York fundraiser, “A Festive Evening of Song.” She is a recently retired Wall Street analyst with over 30 years of experience in the energy industry. Ellen serves on the board of directors of Cinco Resources, Inc., as a member … Read more of “Ellen Hannan” »

Amy Z. Bekier

Secretary

Amy Z. Bekier, Secretary, obtained a Master’s degree in Education from Queens College, New York, and was successful in a career as an insurance agent and Chartered Life Underwriter. She utilized her teaching skills to train other agents. During this time she served on several boards and gained the knowledge and love of giving back to … Read more of “Amy Z. Bekier” »

Carol S. Birnbaum

Chair, Nominating Committee

Carol S. Birnbaum, MD, is a psychiatrist in private practice in Cambridge, Massachusetts. She is a tireless advocate for the Society as an advisor and liaison with patients and families. In 2011, Carol lost her mother to complications related to FSHD. She is eager to promote the Society in its search for a cure and to … Read more of “Carol S. Birnbaum” »

Christine Ford joined the Board in 2016. Chris, a business graduate from California State University, Sacramento, earned her CPA license in 1984 as an auditor with the California State Auditor.  She then moved on to various management positions with the California Lottery and the California State Teachers’ Retirement System, where she was the CFO and then … Read more of “Christine Ford” »

David Glass

Co-Chair, Science, Technology, and Research Committee

David Glass, MD, is Global Head of Muscle Diseases for Novartis Institutes for Biomedical Research in Cambridge, Massachusetts. Prior to joining Novartis, he was Vice President for Muscle Diseases at Regeneron Pharmaceuticals, where he worked for 14 years. Dr. Glass also serves on the Scientific Advisory Board of the FSH Society. He holds an MD from … Read more of “David Glass” »

Lee F. (Frank) Kolakowski, PhD. Frank is a Senior Scientist at Tetracore, Inc., a Rockville, Maryland-based biotechnology company that develops innovative diagnostic tools and instruments for the detection of infectious diseases and bio-terrorism threat agents. Frank’s 25-year scientific research career also includes positions on the faculty of the University of Texas Health Science Center and as … Read more of “Lee F. Kolakowski” »

Louis M. Kunkel, PhD, is internationally recognized in the field of human genetics and the genetics of muscular dystrophy in particular. Over the past three decades, Lew has devoted his career to understanding the molecular basis and developing a therapy for neuromuscular disorders and muscular dystrophy. In addition to his role as Board member, Lew serves … Read more of “Louis M. Kunkel” »

Stuart Lai. Based in New York City, Stuart is the Technology Architect for REDI Technologies, a software system provided to professional traders. He managed a 60-person team that originally developed REDI EMS software at Goldman Sachs. The technology was spun out in 2013 into REDI Technologies, where Stuart’s job is to reimagine the REDI system to … Read more of “Stuart Lai” »

Linda Laurello-Bambarger, MBA. Linda is the Chief Financial Officer of Delta Railroad Construction, Inc. and was previously Project Manager and Contracts Manager for Delta. She is a graduate of John Carroll University with a BS in Business Administration and MBA in Finance at Northeastern University. In January of 2012, she lost her grandfather, Cosmo (Larry) … Read more of “Linda Laurello-Bambarger” »

William R. Lewis III, MD, is Clinical Professor of Internal Medicine in the Division of Cardiovascular Medicine at the University of California, Davis Medical Center and is Director of the Echocardiography Laboratory and Heart Failure Program. As a member of the Board’s Investment Advisory Committee, he also serves on the Society’s Scientific Advisory Board. Having received … Read more of “William R. Lewis III” »

Michelle Mackay joined the Board of Directors in 2010, where she serves on the Development and Nominating committees. As an FSHD patient, she is eager to help advance the Society in the U.S. and abroad. Prior to joining the Board, Michelle has had a career in the travel industry in Australia and in the U.K. The Australian … Read more of “Michelle Mackay” »

Nancy K. Payton. When her son suffered vision loss from Coats disease and was subsequently diagnosed with FSHD, Nancy committed herself to advocating for patients and families. With a professional background in social work, she is accustomed to helping individuals with complex medical and psychosocial conditions. Until 2014, she worked as a drug addiction treatment … Read more of “Nancy K. Payton” »

George is a co-founder, Director and Chief Financial Officer of vXchnge Holdings LLC. vXchnge provides carrier neutral data center services in North America. Prior to his current role, George was Chief Financial Officer of Switch and Data Facilities Company, a NASDAQ listed company that provided data center services in 23 markets across North America. George … Read more of “George Pollock Jr” »

Tom Ruekert is the Vice President for Palo Duro Hardwoods. He assisted with the development of a new charter school in his community that opened in 2013 and now sits on the governing board. Tom also spends his free time coaching his children in sports. Tom is looking to work closely with our development and … Read more of “Tom Ruekert” »

Among her many talents, Wendy can count “boat builder.” In 2013, she hand-built a traditional wooden Farley boat to sell at auction at Hustle4Muscle, the annual golf tournament she and her family established in 2012. The winner bid nearly $8,000 for the boat and then immediately donated it back to the auction where it sold … Read more of “Wendy Shack” »

Neil A. Solomon, MD, is a physician, managed care expert and health system innovator.  While serving in various physician executive roles at Kaiser Permanente, Health Net, and Blue Shield of California, and through chairing and teaching in several statewide practice improvement initiatives in California, Dr. Solomon developed and led large-scale programs to improve quality and efficiency … Read more of “Neil A. Solomon” »

Carden Wyckoff has been an activist and ambassador for the FSH Society since her high school years. A 2015 graduate of the University of Georgia, where she earned her B.S.A. in biological sciences, she was a leader among disability advocates who worked to improve the accessibility of university properties. She was a member of the … Read more of “Carden Wyckoff” »