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Karen Aiach, Founder and CEO of Lysogene, Named Honoree of NTSAD’s 2016 Imagine & Believe Benefit

Posted on: 03 Nov 16

Lysogene, a biopharmaceutical company specializing in gene therapy technology applied to central nervous system diseases, today announced that Karen Aiach, the company’s Founder and Chief Executive Officer, will be the Honoree at Imagine & Believe, a benefit held annually by the National Tay-Sachs & Allied Diseases Association (NTSAD). This year’s Imagine & Believe event will take place on Thursday, November 10, 2016, at the Royal Sonesta Hotel in Cambridge, Mass.

“Lysogene collaborates with patient organizations globally to be sure the community’s needs and perspectives are always represented within our organization, and the contributions of these organizations remain central to Lysogene,” said Ms. Aiach. “Lysogene thanks NTSAD and its commitment and dedication to improve the lives of patients living with Tay-Sachs and related genetic diseases. Their pioneering spirit will continue to inspire Lysogene.”

Susan Kahn, Executive Director of NTSAD, stated: “We greatly admire Karen Aiach for her perseverance and determination as a strong, loving mother and a passionate, successful entrepreneur. Karen is a tremendous inspiration to our large community of patients, families, supporters, researchers, and scientists. She stands to represent our motto that we all can imagine a day when these diseases can be treated, and in order to get there we must believe we can do it.”

Imagine & Believe is held every fall as a special fundraiser to benefit NTSAD’s programs and support services. Past honorees include Robert Coughlin, President and Chief Executive Officer of Massachusetts Biotechnology Council; Stephen Groft, former Director of the Office of Rare Diseases Research (ORDR) at the National Institutes of Health (NIH); Phil Reilly, a Venture Partner at Third Rock Ventures; Henri Termeer, the former CEO of Genzyme; and Emil Kakkis, President and Founder of EveryLife Foundation for Rare Diseases and CEO and President of Ultragenyx Pharmaceutical.

In April 2016, Lysogene partnered with NTSAD and the Cure GM1 Foundation to sponsor the first-ever scientific workshop focused solely on GM1 gangliosidosis (GM1), one of the rare conditions for which Lysogene is developing a treatment. The workshop, held in conjunction with NTSAD’s 38th Annual Family Conference in Orlando, Fla., was chaired by Dr. Cynthia Tifft, Director of the Pediatric Undiagnosed Diseases Program at the National Human Genome Research Institute/NIH, and discussed the latest GM1 research and therapeutic approaches, including gene therapy, pharmacological chaperones, and enzyme replacement therapy. To view the workshop, please visit

About National Tay-Sachs & Allied Diseases Association (NTSAD):

National Tay-Sachs & Allied Diseases Association (NTSAD) is one of the longest-standing patient advocacy groups in the United States. NTSAD focuses on supporting research and the needs of over 500 families and individuals worldwide in several ways, including raising awareness to prevent disease. Their programs and services include providing comprehensive support services to affected families. The NTSAD research support program aims to direct, fund and promote promising research to develop treatments and cures. NTSAD also offers educational and awareness programs directly and through collaborations with other rare disease programs and community partners.

About GM1 Gangliosidosis:

GM1 gangliosidosis is a rare inherited neurodegenerative disorder characterized by severe cognitive and motor developmental delays resulting in early death. It is caused by mutations in the GLB1 gene, which encodes an enzyme called beta-galactosidase necessary for recycling the GM1-ganglioside molecule in neurons. This brain lipid is essential for normal function, but its accumulation causes neurodegeneration, resulting in severe neurological symptoms. There is currently no treatment.

About Lysogene:

Lysogene is a clinical-stage biotechnology company pioneering in the basic research and clinical development of AAV gene therapy for CNS disorders with a high unmet medical need. Since 2009, Lysogene has established a unique platform and network, with lead products in Mucopolysaccharidosis Type A (Sanfilippo A) and GM1 Gangliosidosis, to become a global leader in orphan CNS diseases.

For more information, please visit

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Last updated on: 03/11/2016

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