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National Tay Sachs & Allied Diseases Association Inc

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health

Mission: NTSAD is a 501(c)(3)nonprofit health organization dedicated to the treatment and prevention of Tay-Sachs, Canavan and related genetic diseases. NTSAD is committed to providing information and support services to individuals and families affected by these often fatal disorders, as well as the public at large. The strategies for achieving these goals include public and professional education, family support services, carrier screening, research and advocacy.

Programs: Research: makes grants to scientists through a request for proposal process. These grants are for research projects that involve basic research, translational studies or clinical studies in the areas of neurodegenerative disorders affecting the central nervous system.

family services: co-ordinate parent peer counseling programs for more than 420 families, referrals and advocacy service, crisis intervention, counseling, & consultation to health workers.

education: publish and disseminate educational literature to professionals and lay persons, respond to requests for information, participate in conferences and provide public speakers.

legislative advocacy

Community Stories

6 Stories from Volunteers, Donors & Supporters

6

Client Served

Rating: 5

I was diagnosed with adult, (now called late) onset Tay-Sachs Disease in 1982 due, to a blood test this organization caused to be developed. My membership continues since 1984. As a client, member, volunteer and now, ability to donate has increased, NTSAD has given my life direction for more than 25 years. I do not know where I would be without them. They continue to help thousands medically, emotionally, educationally and most, importantly, maintain their sanity.

6

General Member of the Public

Rating: 5

Our daughter, Madison, was diagnosed with Tay-Sachs in 2006. My dad actually was the one who found out about NTSAD and talked to them first. I then got in tough with Kim, who was extremely kind and easy to talk to. We got into contact with other families through NTSAD and made connenctions. NTSAD helped us financially get to our first conference. The conference held each year gives our family a chance to be with other families going through the same thing. NTSAD is very supportive and we are feel lucky, in a way, to be part of this family.

8

Board Member

Rating: 5

My name is Stewart Altman, I was diagnosed in 1978 with Late Onset Tay-Sachs, I am on the board of directors of NTSAD.

6

Client Served

Rating: 5

Our son Timo was diagnosed with Tay Sachs disease in October 2009 and at the beginning we seemed to be pretty much alone on our journey. This changed when getting into touch with NTSAD who provided important info materials on the disease and what to expect, home care tips to help and prevent problems and most important of all it helped us to get in touch with other families going through the same. Our NTSAD experience is rewarding and supportive and the people working there are really doing a great job.

10

Client Served

Rating: 5

Our son Kaleb was diagnosed with Sandhoff's Disease on 3/19/10 and two weeks later the NTSAD made it possible for my family of (4) to attend a conference where the only thing we had to pay for was our transportation to and from. We were connected with our families in our situation and we gained valuable information that educated us on the disease and allowed us to provide resources for our doctors. They have been incredible to us and for us!

9

Client Served

Rating: 5

Our daughter, Emily, was diagnosed with Sandhoff's Disease at the age if 3 back in 2008. NTSAD helped us connect with other families and provided literature on what to expect as Emily approached the end of her life. We attended the annual family conference in Bostonin 2009, and NTSAD provided a grant to help with some of the costs. The conference was invaluable to my wife and myself in coping with the loss of Emily as well as placing faces and hugs with those we grew to know through phone calls, emails, and care-page websites. NTSAD is a wonderful organization that provides a tremendous service to affected families, luckily whose numbers range in the dozens across the US.