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2016 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

124 Stories from Volunteers, Donors & Supporters

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.

Lindsey19

Volunteer

Rating: 5

This community needs help and they are very appreciative of any contribution you can make. A WORTHY CAUSE

Volunteer

Rating: 5

This is a organization that is not like the bigger ones with Celebrity endorsements ect... and is much a family secret... But the organization is so great at working together and bringing awareness to the disease.. Getting people involved in clinical trials and educating the public and medical fields. We are fighting hard to find a cure and to save lives.. I am so proud to be a part of HDSA The Organization has everyone with Huntington's Disease and their families best interest at heart.. They have built relationship with Pharmaceutical companies and Center's of Excellence to help reduce the cost of medication and to have specialist that actually know about Huntington's Disease to provide the Utmost care - there are support groups across the country.. They listen to what we need and strive to reach and support more and more people in need.

Client Served

Rating: 5

My husband was diagnosed with Huntington's Disease at age 73 three years ago, and now his sister, nephew, daughter have all been identified as carrying the gene expansion. We have benefited greatly from the educational materials, conferences, and support of HDSA. The amount and depth of information created for the general public just isn't available anywhere else. While a cure, or even a stabilizing therapy has not been identified, as soon as it is, HDSA will let us know. Thanks for all you do.

Emily66

Volunteer

Rating: 5

HD affects only a very small sector of the population, but HDSA helps those fighting the disease feel less alone. It has provided great support for my mother, who relies on its support groups and webinars to receive support and information. Being gene-positive, I rely heavily on HDSA's advocacy to encourage the development of a cure before I face the symptoms of HD down the line.

Kim-Sheehan C.

Volunteer

Rating: 5

My daughter has JHD and the people at the Rochester Center of Excellence are the greatest. HDSA has been such a great help. I am at this time organizing a fundraiser to bring awareness to my small town and surrounding areas.

Tiffany12

Donor

Rating: 4

HDSA provides information to people regarding a rare disease with no cure. The public needs this information so they can show their support to this worthwhile cause.

Client Served

Rating: 5

Members of my family have been affected by Huntington's Disease. It is a scary disease with no cure. There is a 50% chace that my sister and I also carry the gene. This organization has been a wonderful resource to our family and friends for the past 12 years. Not only do they provide up to date information, they provide resources for family, friends and care givers. My family is involved in the local support group and participates in the yearly walk to raise money for further research. We appreicate all that this group has to offer.

Client Served

Rating: 5

My husband was diagnosed with Huntington's disease in 2006. He applied for Social Security disability and was denied. I contacted HDSA in the hopes that they could help. Jane Kogan returned my email within 24 hours with contact information to assist me. The person she referred me to was the FIRST and only person to explain to me the reason for my husband's denial. For over 4 years we were lead to believe my husband would receive disability. HDSA has the right people working for them and with them. They understand the emotional toll this disease takes on the entire family affected by HD. Their tireless effort to bring this devastating disease to the forefront of everyone in America is to be commended and rewarded. Trying to get legislation passed in Congress is a daunting feat in the current political climate, but HDSA has accomplished this! If that doesn't deserve recognization, nothing does!

Client Served

Rating: 5

The national organization has been very helpful in providing information and support to HD families, and in providing funds for research on treatments for HD. The Arizona Chapter has organized several retreats in Prescott that have been wonderful experiences, giving HD families from all over Arizona a chance to get together. Our Tucson HD support group is an important resource for us, providing counseling and activities throughout the year. We look forward to our monthly meetings and have enjoyed participating in local fund raising activites. The counselor who runs our meetings, Joan Jervis, visits my wife frequently at home and raises her spirits every time.

Board Member

Rating: 5

The HDSA is an extraordinary organization that helps a small community of patients that would not have the same level of support otherwise.

Will14

Donor

Rating: 5

For its tireless efforts to promote the HD cause in Congress, build awareness among the general public, fund cutting-edge research, and support and educate HD families, I recommend the Huntington's Disease Society of America for the Top-Rated Nonprofits List.

Volunteer

Rating: 5

This organization really helps HD families with information, awareness, and funding. It is one of the few organizations that helps at all. This organiation rocks.

Volunteer

Rating: 4

As someone with a family member with HD and a volunteer for this organization for several years, I am very pleased with their help for HD patients and families. Since many people do not know about HD, this organization brings awareness and educational information with many Chapters across the US. Through their affiliation with the Centers of Excellence at major medical institutions around the country, HDSA also brings help and resources to people with HD in their communities. My family member goes to a Center of Excellence on the East coast and receives excellent care. The support groups sponsored by HDSA Chapters also give hope and awareness to families who are affected by HD.

Peggy P.

Client Served

Rating: 5

when the disease was first discovered in the family, no support systems existed. the manifestation of the disease may cause such shame. as the support system grew, so has education and awareness. the quantity of people at the current support groups is fantastic considering it small start. the society brings hope to families and friends. the attention to the disease is helpful to the patients, families and those at risk.

General Member of the Public

Rating: 5

We need more research to help find a drug that will help people with Huntington's which is such a dipilating disease. Please support the foundation which is full of useful information and keeps us posted with the latest status and updates us on the newest research and information on helping our loved ones with Huntingtons which includes my husband.

Donor

Rating: 1

I would give 0 stars if that were possible. I have been a donor to the HDSA for years thinking that they were fighting to find a cure for Huntington's disease. they have not done what their mission states and in my opinion they are a fraud and should be investigated by the IRS.

Client Served

Rating: 5

My husband has undiagnosed Huntington's. It runs in his mother's family so the rest of the family recognizes he has it but he is in total denial. One of his aunts who was diagnosed committed suicide so we see no benefit to him to push the issue. Huntington's Disease Socitey of America has been very helpful with the information they provide about the disease, how other people deal with it and just general support for us caregivers. I am especially greatful for their efforts to further awareness and research into this disease. When I have an email fron them I am eager for their latest information.