National Tay-Sachs & Allied Diseases Association Forms Jacob's Cure Fund for Canavan Disease Research

Boston, California, UNITED STATES

BOSTON, Oct. 16, 2013 (GLOBE NEWSWIRE) -- 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, 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 enzyme deficiency. 

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."

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

NTSAD leads the fight to treat and cure Tay-Sachs, Canavan and related genetic diseases while supporting affected families and individuals to foster quality of life. Founded in 1957, NTSAD was a pioneer in the development of community education about Tay-Sachs disease, carrier screening programs, and laboratory quality control programs. Today more than two million people have been screened for Tay-Sachs disease. Numerous Tay-Sachs carriers have been identified and thousands of healthy children have been born to high-risk couples. NTSAD was also instrumental in developing Canavan disease carrier screening guidelines and advocating having Canavan screening recommended in medical guidelines [American College of Obstetricians and Gynecologists (ACOG), 1998]. 

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