Leading the Fight to treatand cure Tay-Sachs, Canavan and related diseases
Boston, MA—October 15, 2013—National Tay-Sachs & Allied Diseases Association (NTSAD) today announced that it is forming the Jacob’s Cure Fund to support research and family services in Canavan disease. NTSAD will continue and expand the work of Jacob’s Cure, a non-profit that has funded research for Canavan disease and plans to close this month. Tay-Sachs and Canavan are among a group of about 90 rare inherited diseases that cause neurological impairment and are often life limiting, and have been NTSAD’s focus for more than fifty years.
Canavan disease is a
leukodystrophy, a group of disorders characterized by degeneration of the white matter in the brain. Tay-Sachs is a lysosomal storage disease caused by an
Founded 13 years ago by Jordana Holovach to fund Canavan Disease research after her son, Jacob, was diagnosed with the disease, Jacob’s Cure has raised $10 million to fund medical research in the hope of finding a cure for the progressive neurodegenerative disease. The
gene therapy and stem cell research funded by Jacob’s Cure may lead to treatments for other "white matter" neurological diseases, including Parkinson's, Multiple Sclerosis and ALS.
“We chose NTSAD, the nation’s oldest patient advocacy group, in order to consolidate our efforts to find a treatment or cure for this group of debilitating and often devastating diseases,” Holovach said. “NTSAD’s family support services are also second to none and have earned NTSAD a great deal of respect in the rare disease community.”
Jacob’s Cure will continue its legacy as an NTSAD fund, and Ms. Holovach will join the NTSAD Board as an honorary member.
“Jacob’s Cure has contributed immeasurably to the advance of new approaches to treat Canavan Disease, and we are honored to carry their mission into the future,” said Shari Ungerleider, President of NTSAD. “The diseases are different, but the path is similar both in research and for the families affected, and collectively, our strength is multiplied.”
National Tay-Sachs & Allied Diseases Association 2001 Beacon Street Suite 204 Boston, MA 02135
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At NTSAD, we are making a difference. Every day. Helping families and individuals find their way and providing hope by supporting research on many levels. All of this takes compassion and determination.
There is no time to waste, and families need our help. Those who are fighting today and those who will seek our help tomorrow.
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