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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

141 Stories from Volunteers, Donors & Supporters

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

Donor

Rating: 5

My family has a history of Huntington's Disease. HD is such an unknown disease and the stigma is difficult to live with and share medical history in a way that people understand. Any disease that effects the brain is extraordinarily difficult to live with and to have in your family. This little known disease needs more funding. In combined efforts with those who are researching for other neurological diseases such as Parkinson's and Alzheimers, so much progress can be made. There is much information about prevention and delaying onset that we need more of. We need this help now in time for us to continue raising our families, and most certainly in time for our children. Please put HDSA in the limelight for its superior work and support. They host events through out the year, the HD Run for the Cure is one I participated in last year. It was well run and well attended. We had a great time as a family and helped raise money and awareness for this disease.

Julie80

General Member of the Public

Rating: 5

This charity is very important. My family has been plagued with Huntingtons Disease for way to long. We need this charity to help raise money so we can cure this horrible disease!

Volunteer

Rating: 5

My half-sister died from Huntington's in 2005.I have seen the horrible effects of this disease.My two nieces have a 50/50 percent chance of getting this disease.Huntington's has been wonderful organization,in education,fundraising,and support for persons whom have this disease. Thank-you,Judy Wallace

Client Served

Rating: 5

My husband has HD. We participate in the Geneva Support Group which has provided exceptional information available to us and other members. We also participate in the annual HD Walk each May. It is well organized and raises much needed money for research and HD families. The IL State Convention also provides information and services to families touched by this devistating disease. This organization provides families with the support and information they need while dealing with this disease. It also provides awareness for the community to help them understand the need for compassion for those affected by HD, and the need for research to find a cure.

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.