Cheryl Babo was born in Youngstown, Ohio, but has spent most of her adult life in Phoenix, Arizona. Cheryl and her husband, Keith, are the parents of two children – Ryan Anthony Babo, who was born on February 19, 2002, and Regan Audrey Babo, who was born on March 9, 2005.
Cheryl’s son Ryan was diagnosed with juvenile onset Tay-Sachs disease in March 2005, at the age of 3 years old. Two months later, Ryan received a cord blood transplant at University Medical Center in Tucson, Arizona. Ryan died as a result of transplant complications four months later on August 30, 2005.
Cheryl attended Arizona State University, where she obtained her undergraduate degree (B.A., Philosophy 1990), law degree (J.D. 1993), and joint business administration and information management degrees (M.B.A./M.S.I.M. 2001). She spent the first part of her legal career as a commercial litigation attorney, focusing primarily in the area of complex civil actions. After her son’s diagnosis and death, Cheryl changed her career focus and now practices exclusively in the area of life sciences law. She currently is employed as Assistant Counsel for The Translational Genomics Research Institute (TGen) in Phoenix, Arizona and Of Counsel for Life Sciences Law, PLLC in Chapel Hill, North Carolina.
Kenneth Bihn was born in 1964 and raised in Cleveland, Ohio, graduated from Miami University in Oxford, Ohio in 1986 with an accounting degree. Over the years Ken has worked for Ernst & Young, Figgie International, TRINOVA and Aeroquip-Inoac in capacities ranging from public accountant, operation analyst, controller, and production manager. In June 2000 Ken and his brother purchased Nu-Di Corporation and he became President and co-owner. Since that time the company has nearly tripled in size and is now a world class manufacturer of service use test equipment for the transportation industry.
Ken was married to his wife Julie in September 1993 and has two daughters - Bailey born in October 1996 and Dakota born in May 1999. In September 2005 Dakota was diagnosed with Juvenile On-Set Tay-Sachs disease and since that date Ken has set his sights on defeating this disease. Dakota had a cord blood transplant at Duke Medical Center in January 2006 and Ken and his family and a number of other Tay-Sachs families and friends started the Cure Tay-Sachs Foundation in June 2007.
Dr. Bruce A. Bunnell is an Associate Professor of Pharmacology at the Tulane University Health Sciences Center. He received his undergraduate education at the Purdue University and his graduate training in Molecular Genetics at the University of Alabama at Birmingham (PhD, 1990). He did his postdoctoral training at the University of Michigan, and advanced training as a Senior Staff Fellow at the National Human Genome Research Center at the National Institutes of Health. Dr. Bunnell held faculty positions at the Ohio State University (1998-2002). He joined the School of Medicine at Tulane University in 2002. Dr. Bunnell’s research interests and work of his laboratory have focused on the development of gene and stem cell based therapies for lysosomal storage diseases (Sandhoff and Krabbe disease).
Sue Kahn is Executive Director of National Tay-Sachs & Allied Diseases Association. Prior to joining NTSAD in 2008, Sue was Senior Director, Business Development, for Genzyme Genetics where she was responsible for strategy development, new product assessment, and technology licensing. Prior to Genzyme, Sue worked in various business development, finance and general management roles at Chiron Diagnostics (now part of Siemens). For the past 15 years, Sue has held leadership positions and has worked on project teams for Community Consulting Teams, an organization made up of MBA alumni who provide volunteer consulting services for non-profit organizations in the Boston area. Sue has an MBA from the Amos Tuck School of Business Administration and an A.B. degree in applied mathematics–economics from Brown University.
Sophia Pesotchinsky ( ) is the Chairman of Consortium Oversight Committee.
Sophia Pesotchinsky was born in St. Petersburg, Russia. She has a masters degree in chemical engineering form the Leningrad Institute of Chemical Technology. Sophia brings to the Consortium more than 25 years of experience in medical device and pharmaceutical industries. Sophia co-founded three life science companies; she wrote business plans, raised venture money, and hired teams and advisors. She has a strong operational and management background with emphasis on regulatory and clinical strategies in combination with a strong business knowledge. She also has been a regulatory affairs and business development consultant to a number of large corporations and start-ups, and to the venture capital community.
Sophia’s daughter Vera has been diagnosed with Late Onset Tay-Sachs in 2000. Since that time Sophia has been closely following research in Tay-Sachs and other degenerative neurological diseases; she has established a special endowment fund at San Francisco Jewish Federation for the treatment of these diseases. At the present time Sophia is running a small endoscopic equipment company.
Kevin Romer
- Chairman, National Tay-Sachs and Allied Disease Association (NTSAD) Research Initiative 2002-present
- President and Co-Founder, Mathew Forbes Romer Foundation, Inc., South Florida Affiliate of NTSAD 1998-present
- Board of Directors, NTSAD 1996-present
- Director of R&D, Tyco International Video Safety Products 2007-present
- Master of Business Administration: Loyola College, Maryland 1992
- Bachelor of Science, Electrical Engineering: Duke University 1985
- Kevin's son, Mathew, was born with Tay-Sachs Disease in 1995 and died in 2003. He was the inspiration for the creation of the Foundation in his name and the work that Kevin and his family have tirelessly performed.
Cynthia J. Tifft, M.D.,Ph.D. is Chief of the Division of Genetics & Metabolism at Children’s National Medical Center and Professor of Pediatrics at the George Washington University School of Medicine and Health Sciences. Dr. Tifft manages a large clinical service for children and adults with genetic and metabolic disorders. Her major research focus is lysosomal storage disorders that affect the central nervous system. She is a member and former chair of the Scientific Advisory Board for the National Tay-Sachs and Allied Diseases Association.
Dr. Tifft graduated from the University of Texas Medical School at Houston and received her Ph.D. in genetics from the Graduate School of Biomedical Sciences at the University of Texas. She completed her pediatrics residency at the Johns Hopkins Hospital and genetics fellowship at the National Institutes of Health in Bethesda, MD.
Oversight Committee
The Consortium Oversight Committee (COC) oversees and supports the work of TSGT.
The COC consists of 8 members
- A TSGT scientist (Dr. Seyfried)
- 2 scientists from the NTSAD Research Advisory Panel (Dr. Tifft and Dr. Bunnel)
- 4 members of the financial subcommittee (Mrs. Pesotchinsky, Mr. Bihn, Mr. Romer, and Mrs. Babo and NTSAD Executive Director Mrs. Sue Kahn).
Sophia Pesotchinsky is the Chairperson of the COC.
The COC has the following responsibilities:
- Provide general project oversight
- Provide donors and public (when applicable) with research updates.
- Provide Consortium with financial updates
The COC financial subcommittee is responsible for fund raising in order to provide the consortium with research funds as budgeted. The financial subcommittee also provides financial oversight.
