FSH Society Board of Directors

 

Daniel Paul Perez
President & CEO and co-founder

Daniel Paul Perez is a graduate of Harvard College. He has an extensive background in software and database design, working 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 and worked on the Human Genome Project in Massachusetts.  He also worked as a database specialist on software designed for monitoring clinical drug trials.  Mr. Perez started his career in neurobiology and muscle research at Harvard.  He subsequently moved into large scale information systems and databases developing skills in traditional management information systems as well as large scale databases and software design.  Mr. Perez's expertise in data warehousing and databases led to his contributions in bio-informatics and databases for the Human Genome Project in Massachusetts.  Mr. Perez’s dedication to founding the Society began when he met fellow FSHD patient Dr. Stephen Jacobsen in 1987.  Daniel developed the by-laws of the Society, incorporated the organization as a nonprofit corporation and organized the Board of Directors and Scientific Advisory Board.  Mr. Perez has testified nearly forty times before Congressional Committees seeking 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 research.  In 2001, Mr. Perez 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"), signed into law on December 18, 2001.  The MD CARE Act mandates the National Institutes of Health (NIH) and other federal agencies working on facioscapulohumeral muscular dystrophy and muscular dystrophy to rapidly accelerate research on these diseases.  Mr. Perez serves as a Special Government Employee and Member of the fifteen member Federal Advisory Committee authorized by the "MD-CARE Act" called the Muscular Dystrophy Coordinating Committee (MDCC).  Daniel and his wife, Sue, live in Bedford, Massachusetts.

 

William R. Lewis, Sr., M.D.
Chairman

Dr. William R. Lewis, Sr., has been a member of the Board of Directors since 1991 and Chairman since 2006.  Dr. Lewis has practiced neurological surgery for more than four decades; he still practices, however on a more limited basis.  Dr. Lewis attended Phillips Academy and received undergraduate degrees from the Universities of North and South Carolina.  He earned his Doctorate of Medicine from Duke University Medical Center and completed his residency at Stanford University.  Dr. Lewis currently resides in California with Duncan Lewis, his wife of more than 50 years; they have four children and eight grandchildren.  Dr. Lewis enjoys gardening, spending time with his grandchildren, handiwork, reading medical journals and other educational materials.  Dr. Lewis is also a member of the FSH Society Scientific Advisory Board.

 

Howard L. Chabner, J.D.
Vice-Chairman

Howard Chabner 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.  Howard practiced corporate, equipment leasing and commercial law in San Francisco for 20 years.  Howard received a B.A. from Washington University and a J.D., cum laude, from Harvard Law School. 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.  Together with his wife, Michele, he has written articles about wheelchair accessible travel in Europe and Israel.  Howard and Michele, a painter and ceramic artist, live in San Francisco across from the Golden Gate Park Panhandle.

 

William G. Michael, C.P.A.
Treasurer

As the Treasurer of the FSH Society, Mr. Michael brings expertise as a Certified Public Accountant for nonprofits.  A practicing CPA in Boston, Mr. Michael brings his commitment to our Society. William G. Michael attended schools in Connecticut, Ohio, and Massachusetts.  In 1963 he graduated magna cum laude obtaining a B.S. degree in accounting from Boston College with several academic awards.  In July 1963, he began a career in public accounting with the international firm of Haskins and Sells later to become Deloitte & Touche.  He became a Certified Public Accountant in 1966 and transferred in 1971 to a highly regarded Boston public accounting firm, and has been since 1985, the managing partner of Russell, Brier & Co LLP. Professional organizations include The American Institute of Certified Public Accountants and The Massachusetts Society of Certified Public Accountants. Mr. Michael and his wife, Virginia Turnbull Michael, have a daughter, Elizabeth Ann, and had a son William T. (Billy). At a very early age William was diagnosed with infantile onset FSH dystrophy.  In 1991 when the Perez family organized a group in Dedham, Massachusetts which led to the formation of the FSH Society, he and Billy, Ginny and daughter Beth were there. He became the first and, to date, the only Treasurer of the FSH Society.  In February 2005, two months after Billy's death from FSHD at age 35, he spoke on behalf of FSHD research at a NIH conference on living with FSHD and the quality of life with FSHD, the “Burden of Muscle Disease” conference in Bethesda, Maryland.

 

Carol A. Perez, M.Ed.
Secretary

Mrs. Carol A. Perez is an experienced administrator and counselor in rehabilitation.  Mrs. Perez served as Coordinator and Executive Director of the FSH Society from 1992-2007.  Mrs. Perez has been Secretary since June 2007, and is in charge of Patient Resources.  Initiating the New England FSHD Support Group in 1989, her dual role as service provider and consumer serves to fuel her activism to advocate for the FSHD community in all arenas.  Mrs. Perez lives with her husband, Charles, in Lexington, Massachusetts.

 

E. Ann Biggs-Williams

A founding member of the FSH Society and leader of the Gulf Coast Support Group, Mrs. Biggs-Williams, a retired college librarian, resides in Alabama.  She earned a B.S. degree from the University of South Alabama and an MLS from Florida State University.  During her 25 year work career, Mrs. Biggs-Williams was active in professional library association and served as President of the Alabama Instructional Media Association.  Since retirement, she has been active in the Escambia County Historical Society (ECHS), having served as Vice President and President.  Mrs. Biggs-Williams currently assists with researching local history and genealogical queries for ECHS.  She and her husband, Michael Williams, are active with nature conservation organizations including the Alabama Hiking Trail Society, Alabama Rivers Alliance, Alabama Wildflower Society, and the Nature Conservancy.  In 2006, Mrs. Biggs-Williams was presented a River Hero Award by the Alabama Rivers Alliance.  Presently she serves as a media ambassador for the Great Backyard Bird Count, sponsored annually by the Audubon Society and Cornell University.  As with many people who are affected with FSHD, Mrs. Biggs-Williams finds the balance of activity and rest difficult.  She finds rest and renewal in nature, primarily at her husband’s log cabin, pleasantly located “off the grid” out in the country.  Her husband, Michael, has adapted the cabin in the country with a ramp and widened his walking trails to accommodate a 4-wheel ATV.

 

Robert H. Brown, Jr., M.D., D.Phil.
Board Member Emeritus

Robert H. Brown Jr., M.D., D.Phil., is a Professor of Neurology at Harvard Medical School and Director of the Day Neuromuscular Laboratory and Muscular Dystrophy Association clinic at the Massachusetts General Hospital. The Day Laboratory for Neuromuscular Research was founded in 1984 by Dr. Brown to investigate neuromuscular diseases. Throughout his career, Dr. Brown has been honored for his exceptional commitment to the fight to cure neuromuscular diseases. These honors include induction into the Institute of Medicine and the American Neurological Association. The Day Laboratory has become an internationally recognized center for research and clinical care in neuromuscular diseases. Dr. Brown and his collaborators have made many important contributions to the understanding of the biology of neuromuscular diseases, including identification of several genes involved in familial ALS. The MGH Day Laboratory contributions include investigations of amyotrophic lateral sclerosis (ALS), Miyoshi myopathy, periodic paralysis, and adrenoleukodystrophy (lorenzo’s oil disease). Current research includes stem cell transplantation studies, drug screening to find promising compounds for treatment, human and mouse trials of promising drugs, and genetic investigations to find new genes that cause ALS in families. There are several investigators in this lab, including: Merit Cudkowicz, MD; Peira Pasinelli, PhD; Davide Trotti; PhD; Gilmore O’Neill, MD, Jonathan Francis, PhD  With Dr. Brown’s consultation and assistance, the Society successfully organized the 1997 Scientific Conference on FSHD.  Dr. Brown is also a member of the FSH Society Scientific Advisory Board.

 

James A. Chin, Sr.
Chair, Development Committee
Chair, Investment Committee

James A. Chin, Sr. is a native New Yorker who graduated from the Baruch School of the City College of New York in 1970 with a BBA in Economics and Marketing.  After a successful seventeen year career in broadcasting sales, predominantly with the CBS television stations, Jim changed directions and made his hobby his new career. Since 1987 Jim has been a financial consultant. He is currently the Managing Partner of the Chin-Meador Team at UBS Financial Services in White Plains, New York where he is a Senior Vice-President-Investments. He is active in his church and has been a volunteer firefighter, baseball coach, umpire and regional director for the Fresh Air Fund.  He enjoys financial lecturing, golf and traveling with his wife, Barbara. Jim is chair of the Board’s Development Committee.

 

JoAnn P. Forance

JoAnn is a graduate of Kent State University and has experienced a well-rounded career life.  Her most important jobs were mother, school teacher, accountant, and later, as a hobby, selling real estate in affluent suburbs of Boston.  Though successful in all of these jobs, her best accomplishments were starting and/or building multi-million dollar companies.  As original founder, manager and owner, she propelled two businesses into very successful concerns.  Later, she married a man from Hudson, Massachusetts, who owned a local ambulance company and over the next five years helped that company double in size and profits.  Today, in retirement, she lives in Fort Myers, Florida.  JoAnn is a member of the Board’s Development Committee.

 

David J. Glass, M.D.

Dr. Glass is Global Head, Muscle Diseases for Novartis Institutes for Biomedical Research, Cambridge, Massachusetts.  Prior to joining Novartis, he was Vice President for Muscle Diseases at Regeneron Pharmaceuticals, where he worked for 14 years.  He holds an M.D. 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.

 

William S. Herzberg

Bill Herzberg is a retired neurologist with expertise in clinical neurophysiology. He has a son with FSHD. He is a graduate of Harvard College and Stanford Medical School, where he did his neurology residency; after his residency he did a neuromuscular fellowship with Dr. Robert G. Miller. Bill and his wife Judy help to raise funds for the Society, and Bill is a member of the Board’s Development Committee.

 

 

Beth Johnston, M.B.A.

Beth joined the Board of Directors in 2011.  A native of Colorado, she received a Master of Business Administration from University of Denver and a Bachelor of Science, Business Management & Finance from Colorado State University.  She has worked in information technology, project management, high-technology consulting, telecommunications and real estate.  Beth volunteers for several organizations in New York where she now lives; she currently serves as Vice President of the St. Augustine Home & School Board in Ossining New York and will become President for the  2011-2012 school year.  Beth is co-chair of the annual FSH Society fundraiser, “A Festive Evening of Song.”  Beth’s interest in the FSH Society stems directly from the fundraising efforts she has been overseeing during the last five years.  Second only to supporting efforts to raise the critical funds necessary for FSHD research, she feels that raising awareness of both the disease itself and the function of the FSH Society are the vital areas where she can contribute.  Beth serves as a director and on the development committee.  Beth and her husband Jeff have two daughters Nicole and Samantha.

 

Louis M. Kunkel, Ph.D.

Dr. Louis Kunkel is an internationally recognized geneticist and has years of experience and scientific success in the understanding of the basis for muscular dystrophies.  Over the past three decades, Dr. Kunkel has devoted his career to understanding the molecular basis, and developing therapy, for neuromuscular disorders and muscular dystrophy.  Dr. Kunkel's work is unique in that it covers the entire spectrum of genetics-based research from basic research on genes, to translating how these genes cause disease, to finding new avenues for clinical trials and new therapies.  Dr. Kunkel is a pioneer in the field of human genetics and the genetics of muscular dystrophy, a family of hereditary muscle-destroying disorders marked by progressive muscle weakness and degeneration. In 1986, Dr. Kunkel discovered the gene that causes Duchenne muscular dystrophy, the most common form of childhood muscular dystrophy. In 1987, he was the first to pinpoint the gene's importance in producing the critically needed muscle protein, dystrophin. In the 1990s, Dr. Kunkel 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.  Dr. Kunkel has authored around 200 journal articles and 20 book chapters. He has received more than 20 awards and honors for scientific leadership and achievement, including memberships in the National Academy of Sciences and the American Academy of Arts and Sciences, the Gairdner Foundation International Award in 1989, the Silvio O. Conte decade of the Brain Award in 1991, the MDAUSA's  S. Mouchly Small Scientific Achievement Award in 1999, and the William Allan Award for distinguished service in human genetics in 2004. He is also Chairman of the MDAUSA Scientific Advisory Committee.  For many years, Dr. Kunkel led the Genetics Division at Children’s Hospital Boston. Dr. Kunkel is personally involved in each project in his own laboratory, which helps to assure the fulfillment of his scientific objectives. He leads insightful group discussions weekly, and spends significant time and energy working one-on-one with members of his laboratory. Dr. Kunkel currently holds appointments as Director of the Program in Genomics at Children’s Hospital Boston; Professor of Pediatrics and Genetics, Harvard Medical School, Boston; and Investigator, Howard Hughes Medical Institute. He is also Director of the Sequencing / Genotyping, Expression Array and FACS Sorting Core Facilities at Children’s Hospital Boston. Dr. Kunkel is also a member of the FSH Society Scientific Advisory Board.

 

C. Larry Laurello, P.E.

Mr. Laurello is a partner in the Delta Railroad Construction Company in Ashtabula, Ohio and has been instrumental in providing the annual Delta Fellowship grant since 1997.  Active in the FSHD community, Mr. Laurello has devoted his time to increasing knowledge of FSHD at all levels and providing strong leadership within the FSHD population.  As a concerned FSHD patient, parent, and grandparent, Mr. Laurello is committed to FSHD research worldwide.  Mr. Laurello has been a member of the Board of Directors since 2001.

 

William R. Lewis, III, M.D.

Dr. William R. Lewis, III, 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.  Dr. Lewis has authored over 100 publications.  Dr. Lewis was born at Duke Hospital in Durham, North Carolina and received his Doctorate of Medicine in 1985 from Duke University.  He resides in Sacramento, California.  Dr. Lewis is a member of the Board's Investment Advisory Committee and also serves on the Society's Scientific Advisory Board.

 

Michelle Mackay, M.A.

Michelle joined the Board of Directors in 2010. A native of Australia, she received a degree in communication from Charles Sturt University, Bathurst, NSW, and in fine arts from Newcastle University, Central Coast NSW. She has worked in the travel industry in Australia and in the UK. 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). She is eager to help advance the Society in the U.S. and abroad. Michelle and her husband, David, have two daughters.

 

Theodore, L. Munsat, M.D.
Board Member Emeritus

Dr. Munsat is Professor Emeritus of Neurology at Tufts University. Trained at the Neurological Institute of New York, Dr. Munsat was director of ALS and Neuromuscular clinics at UCLA, University of Southern California and New England Medical Center, where he established the first ALS clinic in New England. He has authored over 200 publications on neuromuscular diseases, with emphasis on ALS and clinical trials in ALS. Dr. Munsat is former President of the American Academy of Neurology. He has received the Sheila Essey Award, among others. Currently, Dr. Munsat directs educational programs for developing countries as Chairman of the Education Committee of the World Federation of Neurology.  Dr. Munsat is also a fomer member of the FSH Society Scientific Advisory Board.

 

Paul Schultz, M.D.
Board Member Emeritus

 

Judith A. Seslowe, M.A.

Mrs. Seslowe joined the Board of Directors in 2009, after serving the Society for many years in her suburban New York community. She holds undergraduate degrees from the University of Pennsylvania and City College of New York, as well as an M.A. from Columbia University Teachers College. Many homes in Westchester County have beautiful gardens and lawns, thanks to Judith Seslowe Landscape Design. Judy founded this company and has worked in residential landscape for many years. She and her husband Kenneth have two married children, Emily and Jonathan, ages 40 and 38 respectively, and four grandchildren ranging in age, 4-13. In addition to her family and work, Judy enjoys bridge, travel, music, theater and art. She has raised significant funds for the FSH Society through her personal giving and chairing concerts in New York for the Society’s benefit, in 2004 and 2009, 2010, and 2011. Judy is optimistic about the prospect of treatments and wants to continue to help advance progress through her work in New York. She is also a resource and peer to other individuals with FSHD.

 

Robert F. Smith, Esq.

Robert F. Smith is an attorney practicing in the areas of real estate and land use matters, estate planning and probate, business organization and transactions from his office in Dennis Port, Cape Cod, Massachusetts.  He was raised in the Amherst, Massachusetts area, graduated from UMass-Amherst in 1969 and Boston University School of Law in 1972.  He and his wife Patti have lived in Harwich, Massachusetts since 1972 where, when he was still physically able, he enjoyed boating and saltwater fishing, and where he still enjoys spectator sports of all kinds.  Active in his community including the Town of Harwich Finance Committee, his church, political campaigns at the town, state and federal levels, and youth organizations, Bob is also the Founder and President of The Harwich Conservation Trust, a not-for-profit organization committed to the conservation and protection of open land.  Diagnosed with FSHD at the age of 14, Bob is the only member of his family with the disease.  He has been active with the FSH Society since 1994, when he started attending the New England Support Group, and has served as a facilitator at FSH Society conferences as well as providing support in many of the Society’s activities.

 

Christopher Stenmon, C.P.A.

Chris Stenmon was born and raised in Quincy, MA, and resides there with his wife, Ellen, and daughter Lauren.  Chris is a Certified Public Accountant for O’Connor & Drew, P.C., where he has been working for more than ten years.  He graduated from Boston College with a Bachelor of Science in management and graduated from Northeastern University with a Masters of Science in Taxation.  Chris was diagnosed with FSH muscular dystrophy in 1989 at age sixteen.  He discovered he had muscle weakness while wrestling at Boston College High School.  Chris has been involved with the FSH Society almost since his diagnosis. For several years Chris has organized an annual fundraiser for the FSH Society, known as the “Annual End of Tax Season Bar Crawl.”  Each year Chris and Ellen design and sell t-shirts for the event and hold a raffle with prizes donated by friends, family and local businesses.  Chris met his wife Ellen at this event several years ago, so it has played a very important role in their lives.  Chris is a member of the Board’s Development and Finance Committees.

 

Executive Director

 

Nancy Van Zant
Executive Director

Nancy holds a B.A. from Earlham College, Richmond, Indiana; and an M.S. in Library Science from the University of Illinois.  She lives with her husband, Kent, in Brookline, MA, near Boston.  She is a regular hiker in the Rockies in the summer and a cross-country skier in the winter.  Nancy started with the FSH Society in June, 2007 and comes to the Society from a career of leading fundraising at academic medical centers including the National Jewish Center for Medicine and Research (Denver), the Kennedy Krieger Institute (Baltimore), and Beth Israel Deaconess Medical Center (Boston).  She has raised funds for many initiatives in biomedical research as well as capital projects, clinical programs, endowed chairs and fellowships.  Nancy has focused her attention on organizing a more disciplined development program and upgrading the Society’s processes and systems.