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June 27, 2010

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June 27, 2010

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.

The Great!

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

For many years, in many ways.

Ways to make it better...

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

Help them, to help families around the world with these horrible diseases.

More feedback...

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

Their universal support for individuals and families affected by these diseases regardless of age, race or national border is truly remarkable.

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

Always state-of-the-art knowledgeable as to causes, with the best support.

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

Go a long way to help medical research in finding a cure for Tay-Sachs & the allied diseases.

Ways to make it better...

I can't think of a thing.

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

The barriers to medical research, barriers to spreading medical knowledge and barriers to the education professional and lay people about these diseases.

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

Research into rare diseases, helps all diseases. Knowledge is needed if the future is to get better. Life in the 21 Century is so good.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 25, 2010

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June 25, 2010

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.

The Great!

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

my everyday life. I know they are there to support us and welcome our family.

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

friendly

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2010

June 24, 2010

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June 24, 2010

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

The Great!

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

I've learned alot about the Allied Diseases.

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2000

June 16, 2010

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June 16, 2010

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.

The Great!

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

finding a better way to deal with our son's condition by getting top info and by sharing our pain with others

More feedback...

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

getting to know other families with affected children

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

competent, efficient and super friendly

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

help with a cure

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 3, 2010

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June 3, 2010

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!

The Great!

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".

Ways to make it better...

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

I would not make any changes!

More feedback...

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

June 2, 2010

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June 2, 2010

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.

The Great!

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

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

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

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