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shelly2

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1 reviews

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

Rating: 5 stars  

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!

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

Without this organization I would be lost. In addition to providing us with the emotional support we need, they have provided us with people to help us "navigate the system".

If I had to make changes to this organization, I would...

I would not make any changes!

What I've enjoyed the most about my experience with this nonprofit is...

This is certainly not enjoyable, all the families we met are dealing with or have already dealt with the death of a child. I'm glad this group is available to provide the support they provide!

The kinds of staff and volunteers that I met were...

Incredible. They were helpful, kind and understanding.

If this organization had 10 million bucks, it could...

Find a cure for the diseases that are killing our children.

Ways to make it better...

There's nothing they can do to make this better, I'm just glad it's there.

In my opinion, the biggest challenges facing this organization are...

All emotional

One thing I'd also say is that...

Thank you NTSAD for being there!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

Role:  Client Served & Received emotional support and education information on the disease we are facing.