Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff diseases

The Eleventh Annual 'Fore' Jack Memorial Golf Outing

Details

 

Meadow Brook Club
Jericho, NY 
Monday, October 7th, 2019 

Please join the Kliger family in honoring the life and legacy of Jack Kliger at this year's FORE Jack Memorial Golf & Tennis Outing. We come together in support of the treatment and prevention of Canavan, Tay-Sachs and related genetic diseases. Click here to Register.
 

For more information or to register by phone, please contact NTSAD at (617) 277-4463.

Jack Kliger    

Jack Alan Kliger was diagnosed with Canavan Disease when he was nine months old. Jack was given a life expectancy of three to five years. Jack passed away in April 2008 just shy of his 14th birthday.

Throughout his short life his family received support and encouragement by being part of the larger family of NTSAD and its members whose children fought similar diseases and similar battles. NTSAD offers parents information, explanations and resources as well as heartfelt support.

Your support will help NTSAD with their goal to eradicate Canavan, Tay-Sachs and similar diseases and also to help the children afflicted with these diseases and their families cope with the pain and suffering associated with these diseases.

What is Canavan?

Canavan is a progressive neurological genetic disorder caused by the absence of a vital enzyme known as aspartoacylase (ASPA). ASPA breaks N-acetylaspartate acid (NAA) into building blocks essential for building myelin. Myelin is a fatty membrane (also known as white matter) that forms a proactive coating around each nerve ensuring the nerve functions properly.  It is one of over 50 genetically inherited disorders known as Leukodystrophies Diseases.

What about research?

There are currently two gene therapy programs in development - Aspa Therapeutics licensed Dr. Guangping Gao's Canavan gene therapy work from the University of Massachusetts Medical School in Worcester, Massachusetts. They are currently working on a natural history study to have an even deeper understanding of the progression of Canavan; which will lead to establishing better endpoints in the upcoming clinical trial. The other program is at Rowan University under the purview of Paola Leone, PhD where she is exploring gene therapy using a different approach. More information is pending.

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