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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

132 Stories from Volunteers, Donors & Supporters

Jamie25

Donor

Rating: 5

HD is a huge part of my family. My Grandfather passed away from the disease a few months ago and many of my family members also carry the gene. Because there is no cure, I really wanted to do something in hopes that one day there would be a cure for this awful disease. I did some research online for a charity. I came across HDSA. I was so pleased to (1) find a NON-PROFIT for HD and (2) a charity that also organizes walks (Team Hope) that was also a NON-PROFIT. I have done other events in the past for different causes that required minimum amounts for fundraising and I was never too sure how much actually went to the cause. With HDSA I know all the money is going right back to the cause. You can even participate without raising any money because support and raising awareness is also important. My family and I have raised money and walked for HDSA every year since learning about the organization and will continue to every year until there is a cure. Being that Huntington’s disease is a family disease, it means a lot that HDSA also gives support to family members/caregivers. It helps knowing that they were and will continue be there for my Grandmother and family during these difficult times. My Grandmother and Grandfather would have celebrated 60 years of marriage just 2 months after his fight with HD ended.

General Member of the Public

Rating: 4

I joyed the Huntington Society when I came aware of that my mom had the disease, from there forward I start to learn about this disease that will affect me, and my family, four years ago I lost my uncle to the disease and see the suffer of my family and learn of more people in my immediate t family to have it. I live in the United State but my family live abroad where people less educated about this disease I found my self learn from this organization to help my family back home. I found this to be so helpful l, informative and I am hoping to follow the foot step's to start such organization back home.

Volunteer

Rating: 5

I am on the board of the Huntington's Disease Washington DC Metro Chapter. I became involved a couple of years ago, because I wanted to find a way to share my experience with HD with others. My mom was diagnosed with HD when I was 4 years old. She inherited HD from her mother, but when she was a child she was told her mom had MS. My mom married and had my sister and I, all without the knowledge of 50% chance that she could inherit HD. Her family kept this disease a secret, like so many other families. It has become so important to me to increase awareness about this disease so that others will fund research and support services for those that are affected. Please help us inform others of this horrible disease!

Amy_46

General Member of the Public

Rating: 5

I am thankful for this site. After my dad being diagnosed with Huntington's and then myself, I look forward to my email to keep me in the know regarding differnet aspects of the disease and things going on.

Dennis H.

General Member of the Public

Rating: 5

Several years ago my wife was diagnosed with Huntington's Disease. My family was nervous, scared, and very uninformed. Shortly after, we learned of HDSA and attended the national HDSA yearly conference in Oklahoma City, OK. The information that my family came home with was invaluable. Our sons, my wife, and I felt that we now had the education needed to take on this disease and make the best lives we can out of the situation. The "not knowing" and fears were helped to be put to rest. Not only did we learn care taking and special needs options but also learned of new and helpful, ground breaking medications. I belong to the NJ chapter and I see how hard all of the chapters work to raise donations and awareness. The NJ chapter has several patient and family support groups which I have attended to help me cope with my wives ultimately declining condition.

Donor

Rating: 5

HDSA helps spread the word and provides support for a devastating family disease, Huntington's Disease (HD). They also fund research and disseminate information to cure HD. Please help.

General Member of the Public

Rating: 5

They have useful and uplifting information readily available for those who are affected by this terrible disease.

Client Served

Rating: 4

My mom passed away of HD two years ago. She left behind four kids and a husband of 34 years. My youngest sister was still (graduates 2013) in high school. The challenges we faced with HD were endless. HDSA provided us with resources to help us deal with what was going on, taking care of my mom and the hope that one day all four of us may not have to suffer if a cure is found. This disease is ugly and devistating. HDSA helps you feel like you are'nt alone. Thank you for all you have do and continue to do. PLEASE FIND A CURE!

Client Served

Rating: 5

Family members with Huntington's, other's with the gene. Support, education, a chance to make a difference!!!

David102

Volunteer

Rating: 5

The HDSA has helped raise awareness and funds to help those people affected by Huntington's Disease. It has provided both emotional and financial support for those suffering with this terrible disease. With more awareness of HD, I believe that HDSA can get us closer to a cure to end this terrible disease.

1 Rick17

Volunteer

Rating: 5

I got involved with this group through my wife. Her father passed away some years ago from HD. Her sister is in an assisted living home with HD. I became involved through doing some research about HD. I asked Jane Kogan for some assistance. I have become a very strong advocate in the state of Texas for putting HD in equal treatment with other more notable diseases. I am also in the process of forming a family support group here in central Texas. This is a great group of people to be associated.