Huntington's Disease Society of America, Inc.

Rating: 4.72 stars   107 reviews

Issues: Health

Location: 505 Eighth Avenue Suite 902 New York NY 10018 USA

Mission: The Huntington’s Disease Society of America is the largest 501(c)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s Disease. The Society works tirelessly to provide the family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD and the 200,000 at-risk in the United States.
Target demographics: everyone affected by HD and their families.
Geographic areas served: all of the United Stated
2014 Top-Rated Nonprofit
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EIN 13-3349872
800-345-4372
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Community Reviews

Rating: 5 stars  

The HD Society is a wonderful organization. Not only do they support those affected by HD, they invest in realistic research and contribute to the HD patient as a whole person, not just the disease. They also provide support for families, caregivers, and the community. The fundraising done for HD is done in realistic, local levels to produce national results. Very pleased overall and there are tons of ways to give.

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Rating: 5 stars  

Best non-profit organization out there. The information they provide is hugely comforting. This disease is not as recognized in the general public, but with HDSA working 24/7 with families and for a cure, we hope to raise more awareness.

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Rating: 5 stars  

1 person found this review helpful

My brother's partner's (J) mom has HD and it has been heart-breaking to watch it progress over the past few years. J and her brother (& her son) have yet to be tested. Initially I had a hard time understanding why, but the more I have learned, and the more I have talked with J about her concerns, I now get it.
It really breaks my heart to think that any one of them has HD, much less two or all 3 :(
J's whole family is active in HD fundraising and research and I am happy to do what little I can!!!

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When was your last experience with this nonprofit?

2013

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Rating: 4 stars  

HDSA provides information to people regarding a rare disease with no cure. The public needs this information so they can show their support to this worthwhile cause.

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When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

For its tireless efforts to promote the HD cause in Congress, build awareness among the general public, fund cutting-edge research, and support and educate HD families, I recommend the Huntington's Disease Society of America for the Top-Rated Nonprofits List.

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When was your last experience with this nonprofit?

2012

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Rating: 1 stars  

1 person found this review helpful

They are the "ENRON" of NONPROFITS! I used to support them in PA, not anymore! - John

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No

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No

When was your last experience with this nonprofit?

2010

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Rating: 1 stars  

I would give 0 stars if that were possible. I have been a donor to the HDSA for years thinking that they were fighting to find a cure for Huntington's disease. they have not done what their mission states and in my opinion they are a fraud and should be investigated by the IRS.

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No

How likely is it that you would recommend that a friend donate to this group?

No

How likely are you to donate to this group again?

No

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

1 person found this review helpful

My name is Rhonda Murphy, and I live in Nashville, TN. I have Huntington's disease and I have already lost two of my four older brothers to this disease. My two sons Nick and Kevin, have a 50/50 chance of getting this disease which is a fatal disease that will have some time to take me down. I've lost my license and cannot
drive due to the loss of the ability handle a car, remember your sense of
accomplishment when you got your driver’s license well, that is just one of
the things this disease has taken from me. My son Kevin moved home from
college to help me at home. My husband Jeff, works at the State of Tn. in
the TDOT, IT dept. The insurance he has is a very vital to our support. I
have already been approved for my disability. Professionally, I was for
over 25 years, one of the first Female, computer programmers in an
environment where this is a male dominated environment . I love to read and attend the monthly support meeting at the Nashville HDSA, that is facilitated by my niece Melissa Hall Darnell.
My youngest brother lives in Austin, Tx, and he has this disease as well. This picture is of me at the HOPE Walk 2011,
I have attended and supported since my DNA results were read in 2010. Now I am an advocate for my fight for this disease and wonderful families who are also fighting the big fight. Keep moving.
Love from, Rhonda

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When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

They help to educate and inform so many people about this horrible disease. I don't know what my family would do with out them!

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

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