Karen Aiach, Founder and CEO of Lysogene

Karen Aiach, Founder and CEO of Lysogene, Named Honoree of
NTSAD’s 2016 Imagine & Believe Benefit
Karen Aiach will be honored as a mother and an entrepreneur with great passion,
determination, and resourcefulness.
FOR IMMEDIATE RELEASE
PARIS, France, and CAMBRIDGE, Mass., USA—November 2, 2016— 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 TaySachs & 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 https://www.youtube.com/watch?v=Uk0kcpfqYxc.
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 GM1ganglioside 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 www.lysogene.com.
Contact:
Marion Janic
RooneyPartners
[email protected]
+1 (212) 223-4017