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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases Research, Health, Health Care

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

Programs: Research - supplies research as advised by its medical & scientific affairs committee. The research projects are involved in finding cures and treatments for huntington's disease.

patient and family services - provides counseling and referral services to patients with huntington's disease and their families.

chapter development - provides workshops, seminars, and symposiums on huntington's disease through a network of chapter affiliates and branches throughout the united states.

education

Community Stories

37 Stories from Volunteers, Donors & Supporters

Mary462

Client Served

Rating: 5

I love that they have outreach for young people affected by the condition. I found several other people that were also taking care of their dying parents all while facing the possibility of their own diagnosis. It helped me not to feel so alone, which is invaluable.

Gia_

Client Served

Rating: 5

The HDSA has changed my life in so many ways. I have been introduced to other great HD organizations through them. I have new found family because of the HD community and all that the HDSA has done for us over the years and I have gained SO much knowledge. Without the HDSA, I would never have found all the love and support I needed to get through the hardships of this disease.

Client Served

Rating: 5

I don't know where I would be without HDSA, they've educated me and at the same time helped me move forward in my time of need.

Client Served

Rating: 5

At a time in my life, when all seemed hopeless in getting the necessary help for my loved one who is suffering from HD, HDSA was there.
I was at the end of rope, I called HDSA, and started crying on the phone trying to get answers on what to do, where do go from here, and all my questions were not only answered, I was comforted by a wonderful woman. She was reassuring that I wouldn't have to do this alone, HDSA would guide and help me with all our needs.
They were more than just words, HDSA provided me with all the resources I needed.
Without their help, I don't know where my family would be now.
My heartfelt thanks are with all the wonderful people at HDSA. During the hardest time of my life, HDSA helped ease my burden and was there for me.
I am forever grateful to all the wonderful, compassionate, and helpful people that are the HDSA! Thank you for all you do for people with HD and their families!

Client Served

Rating: 5

I have attended education days in my state and i am so grateful for HDSA bringing awareness to people in my community. I have been able to connect with other family members.

Client Served

Rating: 5

Thank you for all that you do for our family, we appreciate all of your help.

Client Served

Rating: 5

I have called the help line to receive information and they have been very knowledgeable. Thank you for all of your help.

3

Client Served

Rating: 5

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.

1 Claudia J Wilde

Client Served

Rating: 5

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.

Previous Stories
1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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!