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  

Huntington's Disease is by far the cruelest disease to date. Having said this, having the support of the HDSA is crucial for families on so many levels. THis agency has helped with setting up Doctors appointments, it aids in funding Research , offers support groups in states and cities around the country and gives families HOPE which is all we have right now. HOPE for a future with no Huntington's and a chance for those children at risk to breathe and look forward to their future. I have lost my husband to HD and my 21 year son is symptomatic. Without HDSA I would be lost. Definately the #1 Non Profit around.

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Rating: 5 stars  

Our family has HD. We have been supported, informed, inspired and been given hope through the Huntington's Disease Society of America. This disease is not as wide spread and widely known as many are, therefore, those of us who have this disease are often at a loss. We are given great hope from HDSA, because of the tireless work they do for fund raising and research to find a cure. HDSA has been working tirelessly for decades to find a cure, and they have done this without the huge public awareness and financial donations many diseases get. As a result of the research they have done, many breakthroughs for other diseases have been found and shared by HDSA. The HD community is a very special community, as we have become very proactive in creating many local fundraising events across the country and around the world to support the continued research for a cure. We are very committed to supporting each other to help us live day to day with this disease.

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1 previous review
Rating: 5 stars  

My husband had HD and passed away in January. Our oldest daughter has HD. We have a long history of this disease in our family. HDSA is providing support, research for a cure, hope, knowledge, and understanding for the families living with this disease. Without HDSA and their affiliated local chapters we would be adrift and lost. The support, knowledge and doctors that give us the strength to go on day to day is invaluable.to us. The research that HDSA not only is finding information to help HD persons, but has also helped other diseases like alzheimers, parkinsons and more. I can think of no other organization that have members like HDSA who personally develope fund raisers and contribute their time, money and support as the HD families do. When we first became aware of this disease in our family, we had no information, support, or doctors who knew about HD and we were filled with fear. Now we have the tools, knowledge and support to help us along this tragic road that is Huntingtons.

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?

2012

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Rating: 5 stars  

My family has a history with this devastating disease. Huntington's Disease Society of America has been a godsend. They not only help support, but educate as well. I have used numerous resources provide by HDSA. I truly don't know what I would do without this organization. Thank you to everyone @ HDSA!

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?

2014

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Rating: 5 stars  

The service is great for families and patients alike. No matter what question you ask, or what service you need, the agency employees are there to work tirelessly to give you an answer or point you in the right direction for immediate help. Donations are accepted with great gratitude and receipts are issued without fail. Highly recommended for families, caregivers, etc. Whenever I have visited the office, the staff is courteous and helpful.

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Rating: 5 stars  

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.

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

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Rating: 5 stars  

My husband was diagnosed with Huntington's Disease at age 73 three years ago, and now his sister, nephew, daughter have all been identified as carrying the gene expansion. We have benefited greatly from the educational materials, conferences, and support of HDSA. The amount and depth of information created for the general public just isn't available anywhere else. While a cure, or even a stabilizing therapy has not been identified, as soon as it is, HDSA will let us know. Thanks for all you do.

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

A lot

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

Definitely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

Members of my family have been affected by Huntington's Disease. It is a scary disease with no cure. There is a 50% chace that my sister and I also carry the gene. This organization has been a wonderful resource to our family and friends for the past 12 years. Not only do they provide up to date information, they provide resources for family, friends and care givers. My family is involved in the local support group and participates in the yearly walk to raise money for further research. We appreicate all that this group has to offer.

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?

2012

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Rating: 5 stars  

My husband was diagnosed with Huntington's disease in 2006. He applied for Social Security disability and was denied. I contacted HDSA in the hopes that they could help. Jane Kogan returned my email within 24 hours with contact information to assist me. The person she referred me to was the FIRST and only person to explain to me the reason for my husband's denial. For over 4 years we were lead to believe my husband would receive disability. HDSA has the right people working for them and with them. They understand the emotional toll this disease takes on the entire family affected by HD. Their tireless effort to bring this devastating disease to the forefront of everyone in America is to be commended and rewarded. Trying to get legislation passed in Congress is a daunting feat in the current political climate, but HDSA has accomplished this! If that doesn't deserve recognization, nothing does!

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?

2012

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Rating: 5 stars  

The national organization has been very helpful in providing information and support to HD families, and in providing funds for research on treatments for HD. The Arizona Chapter has organized several retreats in Prescott that have been wonderful experiences, giving HD families from all over Arizona a chance to get together. Our Tucson HD support group is an important resource for us, providing counseling and activities throughout the year. We look forward to our monthly meetings and have enjoyed participating in local fund raising activites. The counselor who runs our meetings, Joan Jervis, visits my wife frequently at home and raises her spirits every time.

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?

2012

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