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2017 Top-Rated Nonprofit

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

136 Stories from Volunteers, Donors & Supporters

Shannon Harrington T.

Client Served

Rating: 5

HDSA is a wonderful organization. I have a strong family history of Huntington's Disease and I am HD gene positive, so they have been a great source of knowledge. They also plan many events for Huntington's patients and families that are great as well.

Volunteer

Rating: 5

My husband has Huntington's Disease. Without the help and support of the HDSA and the local Center of Excellence, he would probably not be alive today. Through the Center of Excellence, he has access to neurologists and psychiatrists that specialize in HD and are able to treat him appropriately. He has also participated in research studies to help better understand the disease and hopefully find a treatment and cure.

General Member of the Public

Rating: 5

I have worked to fundraise money for research for HD and it always amazes me how extensive the collaboration is in this field. The researchers really have good ties to the donating community and are happy to share their work with us in small talks at fundraiser walks as well as at our annual regional conventions. Very few of the other organizations that I have fundraised for tend to have that kind of personal connection with their donors but HDSA really makes me feel like the work that I do for them, whether it be fundraising or advocacy, really makes a difference!

Donor

Rating: 5

My wife was diagnosed with Huntington's Disease, a horrible neurological degenerative disease, 17 years ago. We've seen her go through many changes, to the point that she is unable to walk, talk, communicate in any way, has severe dementia, is incontinent and a number of other problems. In addition, our two adult children each have a 50% chance of getting this dreadful genetic disease. The ONLY hope for my kids and thousands of others, is that the Huntingtons Disease Society of America receives enough funding and support to find a cure or at least treatment, that will make those suffering or at risk for HD, have hope. I urge you to learn more about HDSA and the work they do. Unfortunately, this is a "quiet" disease that doesn't have a celebrity spokesperson or means to have a significant presence in the public eye. They need your financial support. Thank you.

Client Served

Rating: 5

HDSA is helping raise awreness in communities and offers support to people and familes effeced by this horrible disease. Unless you are personally faced with HD or caring for a loved one with HD, there is no way to make someone understand how inense this disease is. It is passed on 50/50, there are no drugs to slow progression and it robs people of their lives or loved ones lives. We need HDSA to continue these efforts and educate people about the true HD story. I am a 35 year single mother who tested positive. I have two children at risk, my hope for them is treatment and a cure. Please realize the importance of this group.

Board Member

Rating: 5

I have a lifetime friend who is gene positive with Huntington Disease as well as so far her oldest son is also. She has three other children. Who might be too. This organization can keep families updated on the lastest things being done in research and can help them get in touch with much need support groups and services

Volunteer

Rating: 5

I volunteer for HDSA all the time and I can honestly say that they are 100% about the cause and helping people affected by Huntington's Disease. HDSA works hard to help those in need and are constantly working on growing as an organization to better themselves and work towards the mission!

General Member of the Public

Rating: 5

I'm a friend of the Cuccinotto family in Illinois. Their family has been has been hit hard with this dreaded disease and they work tirelessly in their fundraising efforts to increase awareness and research for HDSA. I believe this organization should receive the 2012 Top-Rated Award

Becky17

Volunteer

Rating: 5

The staff of the Huntington's Disease Society of America is supportive and incredibly helpful. They do amazing work through their regional offices to help raise awareness and promote education of this devastating disease. Their Faces of HD campaign in May made a huge impact on everyone. As a volunteer for this organization, when planning our Team Hope walk for the past six years their staff - regional and national - came to our aide in so many ways. They assist with organization, ordering and promotion. They also are a positive influence in their communication both with volunteers and with the public. The annual conference is another way they get the message out. The workshops and camaraderie are invaluable. I like the webinars they e-mail out as well. I can log into them on my lunch break at work and get the advice our family needs in a convenient setting. HD is a very difficult disease and affects SO MANY PEOPLE. HDSA is a beacon of hope for our families and it is an honor to work with them as a volunteer. Becky Black, Missouri

David103

Client Served

Rating: 5

While brain-wasting diseases like Alzheimer's and Parkinson's are well-known to the public, most people unaffected by it have never heard of Huntington's Disease. For those who ARE affected by it or whose loved ones are affected by it, this can feel lonely and isolating. HDSA provides a positive, healthy and hopeful place for HD families to go to for hope. HDSA does marvelous work for HD families in many ways: creating a sense of hope with research towards a cure, outreach to families affected by it, and by engaging gene-positive and at-risk people through support groups, fundraisers and access to the latest research information.

General Member of the Public

Rating: 5

HDSA is a great resource for individuals and family members affected by HD.

Donor

Rating: 5

Imagine having a family member or friend who is forced to face Huntington’s disease, who will slowly lose his/her ability to talk, walk, swallow, event think. or if you are a caring person who is touched at the thought of any human being having to slowly lose his/her ability to stand, to bathe, to hug a loved one, to eat, to reason, to communicate in any way, you will be thankful that HDSA is there to help.

This is a complicated disease, requiring a team of Neurologists, Genetic Counselors, Speech, Occupational and Physical Therapists and Social Workers as a treatment team…all working together and communicating about the total physical, mental, and financial impact on the person affected by HD. This coordination of care is provided by the teams of professionals at HD Centers of Excellence, supported by HDSA.

HDSA is a remarkable organization with a dedicated staff, passionate volunteers, and a growing number of supporters. This group gives HOPE to every person with Huntington’s Disease (HD) and to each family affected by the disease, working 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.

It provides families with education on caregiving for their loved ones and Centers of Excellence for medical care.

HD is a devastating progressive and terminal hereditary, degenerative brain disorder for which there is, at present, no cure. It attacks both the mind and the body, eventually rendering the person totally helpless. HDSA is the organization that battles this disease, supports research, educates caregivers, and provides both the HOPE and the action to win this battle.

Please endorse and support HDSA.

Volunteer

Rating: 5

When dealing with a genetic disease where you have a 50% chance of inheriting, it is important for others to realize the importance and impact of HDSD. My entire family has been affected by this terrible disease however HDSD has kept me informed on ways to care and financially support my loved ones. My life would be entirely different. Literally, I would have homeless family members due to the cost of care and "treatment" however HDSD has helped my family find resources to make a better situation out of a horrible diagnosis.

Maria48

Board Member

Rating: 5

I am new to the Delaware Chapter Board of Directors for HDSA. I feel that HDSA had moved in great strides in helping to educate and care for those suffering and the families of those suffering with Huntington's Disease. We have lost several cousins to this disease and it is a heart breaking demise for humans to struggle with. Please consider HDSA for your top great non-profit causes.

Geraldine S.

Client Served

Rating: 5

I am the caregiver for my daughter, who has Huntington'sDisease. I was also the caregiver for my husband who passed away, having the disease H.D.S.A. has helped me in living through these terrifying periods. It is very frightening to see the people you love succumb to this horrible disease, but the society educates and give me as much support as possible. I have learned alot and am still learning more. They have or sponsor many fund-raising events. They also have seminars and conventions to help support and educate interested people, with many knowledgeable doctors and researchers. I cannot imagine what affected people of Huntington's Disease would do if there was not the H.D.S.A.

Donor

Rating: 5

HDSA has been a leading organization in the fight for HD communities and families. With the help of HDSA my dad (diagnosed) has been able to utilize many resources, find doctors in the area that specialize in HD, attend charity events/walks, and as a family, we have been able to utilize these resources as well. The information is up to date, useful, easy to access, and has provided answers to many questions that the HD community has had. I HIGHLY recommend HDSA for the top rated awards, for any monetary assistance available, and for as much recognition as humanly possible.

Lizzy H.

Volunteer

Rating: 5

Great organization! They help with awareness, support, and much more.

RobinBoyer

Volunteer

Rating: 5

HDSA has helped keep those affected by HD, including myself and my family, updated and informed about upcoming events, new research, treatment options, volunteer opportunies, support groups and much more. Its an organization that helps us stay connected. It's good to know there is a place you can turn to.

Kelli3

Client Served

Rating: 5

My husband has 3 siblings with HD and our daughter is at risk. I feel like HDSA is the only place where I can go to get information, help and just find someone who understands. Even many doctors still have limited knowledge of HD. HDSA is a lifeline to me and many others.

General Member of the Public

Rating: 5

I am a member of a Huntington's Disease family. HD has been in my family for as long as I can remember. My Grandfather had HD. My Mother and three of my Aunts have had HD. I have lost a sister and a cousin and now my brother has HD. My sister and I have tested negative so we are very thankful for that as our family has been spared. My sister has two children who are at risk and my brother has four children. One has tested negative and the other three are at risk. Please help put an end to this disease before it takes any more of our families. Thank you, Linda Dixon Arlington, WA