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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

36 Stories from Volunteers, Donors & Supporters

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.