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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

38 Stories from Volunteers, Donors & Supporters

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

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

Volunteer

Rating: 5

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

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.

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

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

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.

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.

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.

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.