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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

151 Stories from Volunteers, Donors & Supporters

Volunteer

Rating: 5

They have been very helpful, I use their website a lot.

Client Served

Rating: 5

I was able to attend an HDSA National Youth Alliance retreat recently. I was able to share with a group of people that could relate to what I was going through. I am grateful that these retreats exists.

Client Served

Rating: 5

I attended the HDSA convention for the first time ever this summer and I have found a family that gets me. It is great to share with a community that understands exactly what I am going through.

Client Served

Rating: 5

Thank you for everything that you do. We have received so much guidance. My family and I really appreciate it.

Volunteer

Rating: 5

This nonprofit is absolutely amazing. I've seen the work they do with patient outreach, scientific research as well as fundraising. Their job in uniting all different kinds of people involved is truly inspiring. The people behind it all are so motivated, friendly and willing to reach out. It's an honor to volunteer for them.

Joe E.2

Board Member

Rating: 5

HDSA has been a critical resource for my family. We've benefited from their services that I started volunteering and now sit on the board of the Albany Chapter. I'm proud to work with the local team on fundraising, advocacy, and awareness building.

Volunteer

Rating: 4

The organization does great work, very happy that i can volunteer my time.

Tarole Hager R.

Board Member

Rating: 5

I have worked with many nonprofits over the years. For the past 3 years I have been diligently working with HDSA. I have been impressed with how professional this organization is run. The heart of HDSA is our members and volunteers and this may be the Biggest Heart I have ever worked with.

Donor

Rating: 5

This is my favorite charity. They play a critical role in raising awareness and hopefully a cure for Huntington’s.

Brittany J.1

Volunteer

Rating: 5

My mom was diagnosed with Huntington's Disease a little over a year ago. This organization has helped me reach out to many people and make this rare disease more well known!

Professional with expertise in this field

Rating: 5

I am working with HD families from time to time and I am glad to be able to have the HDSA website to connect them to as a resource.

General Member of the Public

Rating: 4

I am very happy with the support i have received recently. I was able to talk with someone who understood what i was going through. They were able to guide me in the right direction on how to get care for my mom.

Client Served

Rating: 5

My family and i are grateful for attending convention for the first time this year. It has brough us hope.

General Member of the Public

Rating: 5

You have a very resourceful website that has helped us find more information about the disease. We appreciate the local resources available, it has allowed us to connect locally.

Client Served

Rating: 5

We are grateful for the support we have received. Connecting us to our local community has been very helpful. Our closest COE has helped us navigate through all of our questions.

Donor

Rating: 4

Thank you for raising awareness of this disease. People need to have access to as much information as possible and your website is a great resource.

Professional with expertise in this field

Rating: 5

Great resources and continuing education for professionals.

General Member of the Public

Rating: 4

Thank you for adding educational programs for professionals. We have been able to educate our "team" about how to provide better and comprehensive care to our families.

Client Served

Rating: 5

Thank you for offering so many online resources. We have used online support groups and it has been helpful.

Client Served

Rating: 5

Thank you for the hard work that you do. My children now have a network of support that can relate to them.

Donor

Rating: 5

Great outreach and awareness events to educate the public

Volunteer

Rating: 4

HDSA goes above and beyond with advocacy efforts. They are always helping the community have their voice heard.

General Member of the Public

Rating: 5

I attended the convention for the first time this summer and was very pleased with how much information was available to me. thank you so much, keep up the good work!

Client Served

Rating: 4

Thanks to HDSA's help I was able to find help in my area.

General Member of the Public

Rating: 5

I reached out to their help line and was able to get assistance in my area right away.

Client Served

Rating: 4

Thank you for providing so much information. All the literature we have receied has been really helpful.

Client Served

Rating: 5

Thank you for all of the support you offer. I have participated in the new online support groups. It is a very exciting opportunity to be able to connect with other families that are going through this.

Volunteer

Rating: 5

Without the HDSA and the NYA, I would have felt all alone in this fight against Huntington's Disease. These organizations brought me closer to others affected and made me really understand the disease so much better. They provide so much hope for our community and do such great things!

Volunteer

Rating: 5

HDSA and the NYA have done so much for myself and so many that are affected by HD. Being able to be a part of such an amazing community with so many inspirational individuals affected by HD makes me realize I am not alone, it gives me hope, and pushes me even further in my journey to fight. xoxo

1

General Member of the Public

Rating: 5

HDSA is a nonprofit organization that takes a grass roots approach to spreading awareness and raising money to deal with different issues that affect the families who affected by this debilitating disease. From the establishment of unique medical facilities that help individuals to understand and address the unique psychological and physical conditions created by the disease to fighting on Capital Hill to have bills passed to get people affect by HD the proper health care at the right time, HDSA and its members are at the forefront of trying to help provide the "hope" and "help" need in the the HD community. I am proud to be a part of it!

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.

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!