As Gene Therapy Trial Commences, National Tay-Sachs & Allied Diseases Association Announces New Board Members

As Gene Therapy Trial Commences, National Tay-Sachs & Allied Diseases Association Announces New Board Members

Press Release ( - BOSTON - Oct 23, 2019 - ​​National Tay-Sachs & Allied Diseases Association (NTSAD), a leading advocacy group serving those impacted by Tay-Sachs, Canavan, Sandhoff and Gangliosidosis-1 (GM-1) worldwide, announced the appointment of four new members to its board of directors. Gerry Cox, M.D., Ph.D., Jason Duncan, Jamie Ring and Carla Steckman join the board, effective immediately. 

“Our new Directors’ diverse experience and expertise complement the Board makeup at this pivotal time for the NTSAD community as the first clinical trials proceed, including gene therapy clinical trials for GM-1 gangliosidosis, which started in May, and others to follow,” said Susan Kahn, Executive Director, NTSAD. “We are grateful for their commitment and look forward to their coming contributions.”

Dr. Cox has extensive experience in orphan disease drug development, including enzyme replacement therapies for lysosomal storage disorders and CRISPR-based medicines for inherited retinal dystrophies. A practicing medical geneticist at Boston Children’s Hospital and Instructor in Pediatrics for Harvard Medical School, he has served in key Medical and Development roles at Editas Medicine and Sanofi Genzyme.

Jason Duncan serves as General Counsel to Boston-based Albireo Pharma, Inc.  He has over 15 years of experience with increasing levels of responsibility in the biopharmaceutical industry, including his present role overseeing all global legal operations and as a strategic advisor to the Albireo board of directors.  

Jamie Ring heads Patient Advocacy at Spark Therapeutics. She brings decades of experience in patient advocacy and educational efforts from both the industry and non-profit perspectives and a keen understanding of how both sides can collaborate to advance innovative therapies for rare diseases.  

Carla Steckman, a freelance writer, is currently completing a memoir about parenting Nathan, 9, Audrey, 7, and Talia, who passed away at 23 months from Tay-Sachs Disease. Her experience adds perspective for those navigating the journey of palliative care, anticipatory grief and the experience of raising a Jewish child with the disease the Jewish community has the longest history of working to prevent.

“Affected individuals and their families have been waiting a very long time for the scientific and medical advances that enable clinical trials,” said Staci Kallish, D.O., NTSAD Board President. “As both a physician and NTSAD family member, I am grateful to have the talents of our new board members as we cross the threshold to a very hopeful new era.” 

About NTSAD 

The nation’s first rare disease advocacy organization, National Tay-Sachs & Allied Diseases Association (NTSAD), founded in 1957, funds research toward treatments for Tay-Sachs and related genetic neurodegenerative diseases. NTSAD also provides comprehensive support to affected families worldwide. Having pioneered community education about carrier screening that became a model for all genetic diseases, NTSAD’s initiatives continue to drive research towards treatments and cures, promote screening and raise awareness. More information about NTSAD, Tay-Sachs, GM-1, Canavan, and Sandhoff diseases is available at

Contact: Susan Kahn,

Source : National Tay-Sachs & Allied Diseases Association


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