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105 Reviews
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September 24, 2014

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September 24, 2014

I have to tell you, after giving for 15 years to HDSA I was shocked when it came my turn to ask for help. My wife's Mother passed from HD and we gave religiously for 15 years afterward to HDSA. When my wife in turn became diagnosed with HD, I turned to HDSA for assistance. I was asked my name and SSN so they could see how much donating I had done to HDSA, and then only gave me flyers on where to find assistance. I now give to the Hereditary Disease Foundation that is actually searching for a cure, that is their main goal. HDSA helped you die with HD, it doesn't want a cure, please check the numbers in there budget and finances to see what your donated money goes to.
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 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has been a tremendous help in preparing our volunteers to advocate for Senate andHouse bills that will redefine SS outdated definitions of HD and get rid of the 24 month waiting period once a person is accepted for disability.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

August 22, 2013

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August 22, 2013

This community needs help and they are very appreciative of any contribution you can make. A WORTHY CAUSE

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?

A lot

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

August 22, 2013

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August 22, 2013

This is a organization that is not like the bigger ones with Celebrity endorsements ect... and is much a family secret... But the organization is so great at working together and bringing awareness to the disease.. Getting people involved in clinical trials and educating the public and medical fields. We are fighting hard to find a cure and to save lives.. I am so proud to be a part of HDSA The Organization has everyone with Huntington's Disease and their families best interest at heart.. They have built relationship with Pharmaceutical companies and Center's of Excellence to help reduce the cost of medication and to have specialist that actually know about Huntington's Disease to provide the Utmost care - there are support groups across the country.. They listen to what we need and strive to reach and support more and more people in need.

Ways to make it better...

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

Have Celebrity Endorsements.

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 22, 2013

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August 22, 2013

HD affects only a very small sector of the population, but HDSA helps those fighting the disease feel less alone. It has provided great support for my mother, who relies on its support groups and webinars to receive support and information. Being gene-positive, I rely heavily on HDSA's advocacy to encourage the development of a cure before I face the symptoms of HD down the line.

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?

A lot

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 22, 2013

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August 22, 2013

My daughter has JHD and the people at the Rochester Center of Excellence are the greatest. HDSA has been such a great help. I am at this time organizing a fundraiser to bring awareness to my small town and surrounding areas.

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

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