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Huntington's Disease Society of America, Inc.

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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

141 Stories from Volunteers, Donors & Supporters

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!

1

General Member of the Public

Rating: 5

HDSA is a truly amazing organization. It provides a sense of clarity and comfort to families affected by HD when things are seemingly spiraling out of control. They provide information and resources we are desperately seeking, and show you that you're not in this alone. They definitely deserve the recognition.

1 Krista10

Donor

Rating: 5

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.

2 Laura208

General Member of the Public

Rating: 5

HDSA has helped families and patients themselves with the devastating effects of HD. They offer wonderful programs for families to help educate caregivers and also support for the patient. They have also offered great programs for the children of HD families to deal with this hereditary gene.

They have made great progress in regard to stopping the HD Gene but so much more needs to be done to help the thousands of people effected. One day before I leave this earth I hope to read they have found a way to stop HD and that treatment can be giving to all the patients and family members that tested positive for the gene.

1 Amy_177

Donor

Rating: 5

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.

1 Amanda152

Donor

Rating: 5

Best non-profit doing great work! Feel great about my money going to HDSA!

Karen291

Client Served

Rating: 5

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.

General Member of the Public

Rating: 4

We have a 36 year old daughter with Huntington's. This non-profit page provides us with comfort and information. There are other HD families out there and this helps us with perspective.

Client Served

Rating: 5

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

Jennifer374

Professional with expertise in this field

Rating: 5

Provides clear and instructive information for patients and their loved ones/care team, as well as building a community for those affected.

1

Volunteer

Rating: 5

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!

1

Volunteer

Rating: 5

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.

1

General Member of the Public

Rating: 5

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!

1

Client Served

Rating: 5

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.

1

Donor

Rating: 5

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!!!

1

Volunteer

Rating: 5

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.

Volunteer

Rating: 5

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.

Volunteer

Rating: 5

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.

Professional with expertise in this field

Rating: 5

HDSA worked with me to help me help my clients. Through the HDSA, I further developed HD-specific knowledge within my field. Without the help of HDSA, I would not have been as successful on behalf of my clients.