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105 Reviews
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September 22, 2014

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September 22, 2014

This non-profit is an incredible source for all things Huntington's Disease.
September 18, 2014

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September 18, 2014

Provides clear and instructive information for patients and their loved ones/care team, as well as building a community for those affected.
September 18, 2014
1 person found this review helpful

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September 18, 2014
1 person found this review helpful

Just the information alone and the help put you in touch with others in your area. They help connect you to doctors and people that can help the families. Not to mention the support groups!!!!! My family would be lost with you them!
September 11, 2013
1 person found this review helpful

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September 11, 2013
1 person found this review helpful

My son in-law has HD. This affects his entire family who do our best to provide support. The HDSA does a wonderful job of advocating for the needs of HD victims and their families.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

August 27, 2013
1 person found this review helpful

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August 27, 2013
1 person found this review helpful

The Huntington's Desiese Society of America is a superb organization. I attended parts of the conference in Jacksonville with a family friend. Everyone was welcoming, informative. There was a great talent show and the participants, MC and other volunteers there were passionate and enthusiastic about fighting for their cause and raising money to find a cure. I met kind people at the conference and was invited to attend a support group to get more information and be more aware, as I am a teacher. The people there as well as th group leader were welcoming, kind and generous!

More feedback...

Will you volunteer or donate to this organization?

Unsure

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

August 26, 2013
1 person found this review helpful

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August 26, 2013
1 person found this review helpful

I discovered that my husband had HD five yrs ago . I went to the HDSA web site and was very pleased with all the info I discovered. I have been going to a HD support group ever since. Without having all the info and support that HDSA has to offer I would be more lost.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

August 26, 2013
1 person found this review helpful

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August 26, 2013
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!!!

More feedback...

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?

2013

August 25, 2013
1 person found this review helpful

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August 25, 2013
1 person found this review helpful

HDSA helps people withbHD and their families by in many different ways. : support groups, letting us know about all the research going onand being active in getting bills passed in Congress. Jane Kogan has been a tremendous help in preparing our volunteers to advocate for Senate andHouse bills that will redefine SS outdated definitions of HD and get rid of the 24 month waiting period once a person is accepted for disability. Right now many with HD are turned down when they first apply for disability because if the outdated definition of HD. HDSA heps with training and conference calls when putting on a fundraiser like the Walks for Hope.

Ways to make it better...

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

Give more money from the Walk to research.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

August 25, 2013

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August 25, 2013

I am a daughter who's mother was diagnosed with HD, I knew nothing about it unitl I found this organization. It not only answered the billions of questions I had, but also provided with me emotional support from now friends, it gives me a since of security knowing I am not the only person in the world going through this. This organization in a way saved my life.. I was overwhelmed and ready to give up and they would NOT let that happen. For that I will always be truly thankful. This is an organization that helps people in every way possible. Thank you for all you have done and continue to do everyday. I will always be a proud volunteer HDSA.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

August 23, 2013

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August 23, 2013

My brother was diagnosed with HD in 2006. I started working with HDSA in 2009. There is never enough dollars spent on a disease that is so devastating; however, HDSA does so much more. Helping families cope, providing education to not only families but also the medical community, and helping unite us all in the fight against HD. My family has truly been blessed to have found the support we needed thru HDSA.

Ways to make it better...

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

Spend more money on research

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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