National Tay-Sachs & Allied Diseases Association to Honor Lysogene CEO Karen Aiach at Annual Benefit Event

BOSTON, MA – 10/20/2016 (PRESS RELEASE JET) — The National Tay-Sachs & Allied Diseases Association (NTSAD) will honor Lysogene CEO Karen Aiach at Imagine & Believe, NTSAD’s annual Boston fundraising event to be held Thursday, November 10, 2016 at the Royal Sonesta Hotel, Cambridge, MA.  Proceeds from the benefit will fund rare disease research and provide support for families affected by Tay-Sachs, GM-1, Canavan, and Sandhoff diseases.

Lysogene, a clinical stage biotechnology company, focuses on finding a treatment for MPS IIIA, also known as Sanfilippo syndrome, a rare neurodegenerative lysosomal storage disorder marked by progressive motor and intellectual decline in affected children like Karen’s daughter, Ornella. 

“Karen is a tremendous inspiration to our large community of patients, families, supporters, researchers, and scientists,” says NTSAD Executive Director Susan Kahn. “She embodies the passion, determination and resourcefulness required to bring a treatment to market. We honor Karen as a mother, entrepreneur and humanitarian.”

In collaboration with long-time NTSAD research partners Miguel Sena-Esteves, PhD, and Doug Martin, PhD, Lysogene is also supporting GM-1 gangliosidosis preclinical studies.  NTSAD shares and supports Karen’s interest in advancing gene therapy for GM-1.

The nation’s longest-standing rare disease advocacy organization, National Tay-Sachs & Allied Diseases Association (NTSAD), founded in 1957, funds research toward treatments and a cure for Tay-Sachs and related genetic neurodegenerative lysosomal storage diseases and leukodystrophies. 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 education initiatives promote screening and prevention to the public and healthcare community. 

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