Sophia Pesotchinsky ( is the Chairman of Consortium Oversight Committee. She is a Board member of NTSAD and her daughter Vera has a special fund.

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; Vera has a special fund in NTSAD foundation 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.

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.

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.

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 6 members

  • Dr. Seyfried (TSGT Member)
  • Dr. Tifft (NTSAD Research Advisory Pane)
  • Mrs. Pesotchinsky (NTSAD Board member, Chairman of Consortium oversight committee))  
  • Mrs. Sue Kahn (NTSAD Executive Director)
  • Mr. Ken Bihn, President and Founder of Cure Tay-Sachs Foundation
  • Mr. Kevin Romer (NTSAD Board Member).

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
& Publications