Board of Directors

SMW13-Story3-DanielPerezDaniel Paul Perez President & CEO and Co-founder, FSH Society 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 organization as a nonprofit corporation, and organized the Board of Directors and the Scientific Advisory Board. Read full bio...

He has testified nearly 50 times before congressional committees to seek funding for FSHD research and meets regularly with researchers, clinicians, and the heads of the National Institutes of Health and other federal agencies to help organize meetings, symposia, research plans, white papers, and research on dystrophy. In 2001, Daniel was a key architect and force in the passage and implementation of the Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2001 (“MD-CARE Act”), which was signed into law on December 18, 2001. The MD-CARE Act mandates the National Institutes of Health (NIH) and other federal agencies working on FSHD and other muscular dystrophies to rapidly accelerate research and efforts on these diseases. He serves as a Special Government Employee and member of the 15-member Federal Advisory Committee authorized by the MD-CARE Act, called the Muscular Dystrophy Coordinating Committee (MDCC).

A graduate of Harvard College, Daniel started his career in neurobiology and muscle research as an undergraduate. He has an extensive background in software and database design, and works on corporate MIS and financial systems, marketing research software, and data acquisition. He was chief architect and designer of Oracle’s multi-dimensional database application. Daniel’s expertise in data warehousing and databases led to his contributions in bio-informatics and databases for the Human Genome Project in Massachusetts. He also worked as a senior database specialist on software designed for monitoring clinical drug trials.

Daniel and his wife Sue live in Bedford, Massachusetts.

=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 a member of the FSH Society Scientific Advisory Board. Read full bio...

Dr. Lewis attended Phillips Academy and received undergraduate degrees from the University of North Carolina and the University of South Carolina. He earned his doctorate of medicine from Duke University Medical Center and completed his residency at Stanford University.

Dr. Lewis enjoys gardening, spending time with his grandchildren, handiwork, and reading medical journals and other educational materials. He is still practicing neurological surgery on a limited basis in California, where he currently resides with his wife Duncan Lewis; they have four children and eight grandchildren.

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 to the Society. As an activist for disability rights and wheelchair access, Howard brought a successful lawsuit against a major life insurance company for charging a discriminatorily high premium based on his having FSHD. Read full bio...

Howard received a BA from Washington University and a JD, cum laude, from Harvard Law School. He and his wife Michele have authored articles about wheelchair-accessible travel in Europe and Israel.

Howard and Michele live in San Francisco across from the Golden Gate Park Panhandle.

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. Read full bio...

 Prior to his role as a financial consultant, Jim focused his 17-year career in broadcasting sales, predominantly with the CBS television stations, before he switched to finance in 1987.

Jim graduated from the Baruch School of the City College of New York in 1970 with a BBA in Economics and Marketing. He enjoys financial lecturing and assiduously follows the stock market.

A native New Yorker, Jim now resides in Tulsa, Oklahoma and has been a volunteer firefighter, baseball coach, umpire, and regional director for the Fresh Air Fund. He is a doting grandparent and when he is not spending time with his family, he can be found on the golf course.

EllenHannanEllen 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. Read full bio...

 Ellen serves on the board of directors of Cinco Resources, Inc., as a member of the Audit, Compensation and Nominating committees. Her community service activities include serving on the Board of Trustees of Newton Country Day School of the Sacred Heart for over 15 years, where she headed the Investment Committee. She also served as a member of the Alumni Association Board for Skidmore College as the Chair for Career and Professional Development and is a past member of the College’s President’s Advisory Council. Ellen continues to be active as Fund Chair and Class Agent for her class, and she is an avid bridge player.

As someone with a strong family presence of this disease, she has a deep, personal interest in advancing the efforts to raise awareness and fund the research necessary to find a cure for FSHD. Ellen graduated from Skidmore College with a BS in Business and received an MBA from Pace University. She and her husband, Kevin Monahan, reside in Old Greenwich, Connecticut.

Amy Zoe BekierAmy 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 the community. Read full bio...

 Amy is an FSH Society “Future Fund” designee, and as a Board member she would like to help expand its role in the public awareness of FSHD, which in turn will assist in patient identification and fundraising. Her personal motto, “I can no longer sit and cope but must get active and hope,” is her mantra and hopefully serves to inspire others.

Amy is an artist and avid golfer. When FSHD started to interfere with her passions, she found alternative ways to continue doing the things she loves. Amy taught herself to paint left-handed when she could no longer raise her right arm. She is an award-winning artist who enjoys painting with soft pastels and oils. Amy still plays modified recreational golf and is a member of the Bernardo Heights Country Club. She lives on the fairway of her home course.

CarolBirnbaumCarol 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 offer support and guidance for patients and their families. Read full bio...

Carol is a graduate of Bryn Mawr College and the University of Connecticut School of Medicine. She completed her residency in psychiatry and a fellowship in biological psychiatry at Massachusetts General Hospital, and is a graduate of the Boston Psychoanalytic Society and Institute. She resides in Cambridge, Massachusetts, with her husband Adam, a chef, and two sons.

ChristineFordChristine 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 Chief of Staff.Read full bio...

Since retiring in 2012, Chris has been able to more vigorously pursue her interests in travel and volunteering.  She has held volunteer positions with her city’s personnel board and as a tax preparer with AARP.  She currently volunteers in a library program, assisting grade school children and their parents in understanding the State’s new Core Curriculum.

Having a sister who’s been affected by FSHD for over 30 years, Chris is very committed to furthering the Society’s education, research, and development goals, so that there can be a future with treatments and a cure. Chris is a member of the Sacramento FSH Networking Group, where she continues to educate herself about FSHD and reach out to others who may be newly diagnosed. Chris, a native New Yorker, currently resides in Roseville, California with her husband Jim.

DavidGlassDavid 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. Read full bio...

 He holds an MD from New York Medical College and conducted postdoctoral work at Columbia University. He is the co-author of more than 50 peer-reviewed research articles on cell signaling mechanisms in neuromuscular disease, obesity, and cancer.

FrankKolakowskiLee 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 consultant for several U.S. government agencies. Read full bio...

He is currently focused on bioinformatics applications applied to genomics. Frank’s interest in scientific progress on FSHD stems from the disease’s impact on several family members. He holds a Ph.D. in biological chemistry from the University of Pennsylvania and is the co-author of more than 40 peer-reviewed research articles on cell signaling and molecular biology. Frank enjoys photography, camping, and hiking.

SAB-LouKunkelLouis 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 on the Society’s Scientific Advisory Board. Read full bio...

 His major accomplishments include the discovery of the gene that causes Duchenne muscular dystrophy (1986) and being the first to pinpoint that gene’s importance in producing the critically needed muscle protein, dystrophin (1987). In the 1990s, Lou demonstrated that injection of either blood stem cells or muscle stem cells can partially restore dystrophin in affected skeletal muscles—a finding that may lead to treatments for many types of muscle diseases.

Lou has authored over 200 journal articles and 20 book chapters, and received more than 20 awards and honors for scientific leadership and achievement, including memberships in prestigious academies. He holds various director and chairman roles and is a professor of pediatrics and genetics at Harvard Medical School.

StuartLaiStuart 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 operate in a faster, better, cheaper modality while retaining the reliability and security standards required for financial trading applications.Read full bio...

“Getting to disease treatment is some time away just like getting to a fully operational software system. The time to market is never satisfactory to the stakeholders,” Stuart notes. “At Goldman Sachs we have dealt with this by going after the ‘low hanging fruit’…I believe there is low hanging fruit to be had for the FSH patient that the FSH Society can bring to market.”

Stuart graduated from UCLA with a Bachelor of Science in Computer Science and Electrical Engineering. 

lindalaurelloLinda 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) Laurello, who had FSHD and was a long-time board member and major supporter of the FSH Society.Read full bio...

 Her family history of FSHD, coupled with her love and admiration for her grandfather Larry, gives her a passion for helping to find a cure for this disease. She is excited to help fight for a cure and to be an advocate for patients and families. Linda and her husband, Shane Bambarger, live in Jefferson, Ohio.

WilliamLewisIIIWilliam 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. Read full bio...

 Having received his doctorate of medicine in 1985 from Duke University, Dr. Lewis has authored over 100 publications. He currently resides in Sacramento, California.

MichelleMackayMichelle 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. Read full bio...

 The Australian native received a degree in communication from Charles Sturt University, Bathurst, NSW, and in fine arts from Newcastle University, Central Coast NSW.

Michelle volunteers for several charitable organizations in Michigan where she now lives; she serves on the boards of the Food Bank of South Central Michigan (Kalamazoo) and the Gilmore Car Museum (near Battle Creek). Michelle and her husband David have two daughters.

NancyPayton_CroppedNancy 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 counselor for the Tacoma-Pierce County Health Department in Tacoma, Washington.Read full bio...

As an advocate for FSHD, Nancy is interested in raising awareness and funding through patient meetings and events. She serves as a moderator for the FSHD Parents Facebook group. Nancy also sits on the Jack McGovern Coats Disease Foundation Advisory Board.

Nancy is excited and proud to join the Board of the FSH Society as she has had nothing but positive experiences with them since day one. She is honored to know that she can be of help to newly diagnosed families, and guiding families to the resources available at the FSH Society to help answer any questions they may have. She is very much looking forward to working with the diverse and dynamic team on the FSH Society Board of Directors.

Nancy’s favorite pastime is making Coats Monkeys for children affected by Coats Disease. She also enjoys spending time with her grown children and grandson, get togethers with friends and family, gardening, travel and music. She lives in Puyallup, Washington, with her husband Norman.

GeorgePollock pictureGeorge Pollock Jr. 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.Read full bio...

George earned BS and Master’s degrees in Accounting from the University of Florida. He has a passion for bicycle racing and continues to ride on regular basis. He is a native of Florida and currently resides near Tampa, Florida with his wife, Jane. George and Jane have two children, Emily and Jacob, both currently in college.

George is very interested in increasing awareness of FSHD and raising funds to support promising research.

TomRuekertTom 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 investment committees to bring awareness and additional funds to FSHD.  His wife, Katie, was diagnosed with FSHD in 2011 and has become a strong advocate for the FSH Society and has started the Walk & Roll to Cure FSHD in Castle Rock, Colorado.

WendyShackWendy Shack. 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 again for the same amount, netting almost $16,000 for the FSH Society. That is just one example of Wendy’s remarkable fundraising prowess. Over three years, Hustle4Muscle has become a major fundraising event for the Society.Read full bio...

Wendy was a Staff Associate at American Electric Power in Albany, Texas, where she oversaw and managed many aspects of the business. She and her husband live in Albany. Wendy and her son have volunteered for FSHD research at the Kennedy Krieger Institute, and her daughter will also be participating in that study. “I have the drive and passion that it takes to serve on this great board,” she says. “But most importantly I have the heart of a mother and nothing is more important to me than a cure.”

Neil_Solomon_4x6 2014Neil 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 in the health care system.  Read full bio...

Previously, Dr. Solomon founded and led NAS Consulting Services, a health care advisory to medical groups, hospital systems and health plans. Currently Dr. Solomon is co-founder and Chief Medical Officer of MedZed, LLC, a telemedicine-enabled home care company that helps frail and vulnerable individuals receive excellent health care services in their own home. Dr. Solomon practiced internal medicine for 20 years in ambulatory, hospital and institutional settings.  He lives in San Francisco with his wife and two children.