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mkoltonski

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1 reviews

Review for National Tay Sachs & Allied Diseases Association Inc, Boston, MA, USA

Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

Disease Education, compassion, patient and family advocacy, public awareness.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

Role:  Client Served & Our daughter, Emily, was diagnosed with Sandhoff's disease, and NTSAD provided help and support.