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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 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.

1 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.

1

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.

1

Volunteer

Rating: 4

Thank you HDSA for introducing me to other youth in the HD community me and allowing me to gain great experience as a volunteer.

1

Volunteer

Rating: 5

The HDSA and the NYA have done tremendous things to connect me with others going through similar struggles and to ultimately make my life better.

1

Volunteer

Rating: 5

HDSA has changed my life for the better. This organization has not only provided me with resources and education, but also a FAMILY. In this organization, family truly is everything. I am ever grateful for HDSA and their support of youth across the U.S. through their National Youth Alliance.

1

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!

1 Frances17

Donor

Rating: 5

HDSA is a major platform for individuals who are at risk, have HD or have loved One's who suffer from the disease. I am thankful for HDSA and the awareness this organization raises for the disease, as well as the resources it provides for individuals/families affected by the disease.

1

Volunteer

Rating: 5

Thank you HDSA for all of your support. We appreciate the help and resources.

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.

General Member of the Public

Rating: 4

I have called HDSA several times and they are always helpful, courteous and compassionate.

Client Served

Rating: 5

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

Donor

Rating: 5

HDSA offers families a place where they can find the most up to date information on HD. Often they are the first place a person with HD calls when they learn that HD is in their family. HDSA advocates for the HD community every day.

Professional with expertise in this field

Rating: 5

There is so much incredibly valuable information on the HDSA.org website and on HDSA's social media pages. The HDSA YouTube Channel has everything families need from research news and caregiver tips. HDSA also coordinates excellent community events and support groups from coast to coast.

Donor

Rating: 5

This is a great non profit fighting for a worthy cause!

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.

Volunteer

Rating: 4

This nonprofit needs support. This disease is unknown to most and deserves our attention. These families have generations of unfortunate and almost unimaginable discrimination. It is one of the worst mental and physical disabilities known to man. These families are struggling and need our financial help. Because the families are so mentally affected they are unable to ask for help. PLEASE consider this charity for donations. Google it for more info.

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.

2

Volunteer

Rating: 5

A family with 2 aunts and my mother all with HD. Could no ask for a better organization!

5

Volunteer

Rating: 1

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.