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2017 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

21 Stories from Volunteers, Donors & Supporters

Donor

Rating: 5

Great outreach and awareness events to educate the public

1 Frances17

Donor

Rating: 5

HDSA is a major platform for individuals who are at risk, have HD or have loved One's who suffer from the disease. I am thankful for HDSA and the awareness this organization raises for the disease, as well as the resources it provides for individuals/families affected by the disease.

Donor

Rating: 5

HDSA offers families a place where they can find the most up to date information on HD. Often they are the first place a person with HD calls when they learn that HD is in their family. HDSA advocates for the HD community every day.

Donor

Rating: 5

This is a great non profit fighting for a worthy cause!

1 Krista10

Donor

Rating: 5

The HD Society is a wonderful organization. Not only do they support those affected by HD, they invest in realistic research and contribute to the HD patient as a whole person, not just the disease. They also provide support for families, caregivers, and the community. The fundraising done for HD is done in realistic, local levels to produce national results. Very pleased overall and there are tons of ways to give.

1 Amy_177

Donor

Rating: 5

Best non-profit organization out there. The information they provide is hugely comforting. This disease is not as recognized in the general public, but with HDSA working 24/7 with families and for a cure, we hope to raise more awareness.

1 Amanda152

Donor

Rating: 5

Best non-profit doing great work! Feel great about my money going to HDSA!

1

Donor

Rating: 5

My brother's partner's (J) mom has HD and it has been heart-breaking to watch it progress over the past few years. J and her brother (& her son) have yet to be tested. Initially I had a hard time understanding why, but the more I have learned, and the more I have talked with J about her concerns, I now get it.
It really breaks my heart to think that any one of them has HD, much less two or all 3 :(
J's whole family is active in HD fundraising and research and I am happy to do what little I can!!!

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.

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.

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.

1

Donor

Rating: 5

My name is Rhonda Murphy, and I live in Nashville, TN. I have Huntington's disease and I have already lost two of my four older brothers to this disease. My two sons Nick and Kevin, have a 50/50 chance of getting this disease which is a fatal disease that will have some time to take me down. I've lost my license and cannot
drive due to the loss of the ability handle a car, remember your sense of
accomplishment when you got your driver’s license well, that is just one of
the things this disease has taken from me. My son Kevin moved home from
college to help me at home. My husband Jeff, works at the State of Tn. in
the TDOT, IT dept. The insurance he has is a very vital to our support. I
have already been approved for my disability. Professionally, I was for
over 25 years, one of the first Female, computer programmers in an
environment where this is a male dominated environment . I love to read and attend the monthly support meeting at the Nashville HDSA, that is facilitated by my niece Melissa Hall Darnell.
My youngest brother lives in Austin, Tx, and he has this disease as well. This picture is of me at the HOPE Walk 2011,
I have attended and supported since my DNA results were read in 2010. Now I am an advocate for my fight for this disease and wonderful families who are also fighting the big fight. Keep moving.
Love from, Rhonda

Donor

Rating: 5

They help to educate and inform so many people about this horrible disease. I don't know what my family would do with out them!

Donor

Rating: 5

This is a society that really deserves to be heard about for all of their hard work. I watched both my grandmother and mother succumb to this disease. Even when my mother was in the fight of her life (back in the 2000s), no one spoke about this disease. Oftentimes she was mistreated in public because everyone assumed she was a junkie. However, the scariest aspect of it all, was how closed off from the rest of the world it makes you feel. Because of the health implications, even care givers are fearful of speaking about it out loud. This society is a wonderful place where those touched by this disease can come together and we don't have to be silent. It is a resource I wish I'd had when my mother was still alive. They offer creative ways to donate to their society - either through raffles or flower bulbs as Christmas gifts. They also send out regular newsletters that keep everyone up to date on the latest research in the pipeline for HD. They also send out regular profiles of other people and their struggles with HD. Thank you HDSA, for everything that you do.

Donor

Rating: 5

When one of my best friends was diagnosed with Huntington's Disease we were not sure where to turn. His doctor recommended getting in touch with the Huntington's Disease Society of America or HDSA. I believe they are the only group that helps people with Huntington's and their caregivers. The HDSA offered very informative information for my friend Jimmy and his caregivers. For the last 6 years the HDSA has helped me raise money and awareness to battle this deadly disease. As of this time there is no treatment for HD. The HDSA is committed to helping people with HD, their caregivers and to raising money for HD research. When this disease is cured it will because of all the great work that the HDSA has done.

Donor

Rating: 5

My wife was diagnosed with Huntington's Disease, a horrible neurological degenerative disease, 17 years ago. We've seen her go through many changes, to the point that she is unable to walk, talk, communicate in any way, has severe dementia, is incontinent and a number of other problems. In addition, our two adult children each have a 50% chance of getting this dreadful genetic disease. The ONLY hope for my kids and thousands of others, is that the Huntingtons Disease Society of America receives enough funding and support to find a cure or at least treatment, that will make those suffering or at risk for HD, have hope. I urge you to learn more about HDSA and the work they do. Unfortunately, this is a "quiet" disease that doesn't have a celebrity spokesperson or means to have a significant presence in the public eye. They need your financial support. Thank you.

Donor

Rating: 5

Imagine having a family member or friend who is forced to face Huntington’s disease, who will slowly lose his/her ability to talk, walk, swallow, event think. or if you are a caring person who is touched at the thought of any human being having to slowly lose his/her ability to stand, to bathe, to hug a loved one, to eat, to reason, to communicate in any way, you will be thankful that HDSA is there to help.

This is a complicated disease, requiring a team of Neurologists, Genetic Counselors, Speech, Occupational and Physical Therapists and Social Workers as a treatment team…all working together and communicating about the total physical, mental, and financial impact on the person affected by HD. This coordination of care is provided by the teams of professionals at HD Centers of Excellence, supported by HDSA.

HDSA is a remarkable organization with a dedicated staff, passionate volunteers, and a growing number of supporters. This group gives HOPE to every person with Huntington’s Disease (HD) and to each family affected by the disease, working 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.

It provides families with education on caregiving for their loved ones and Centers of Excellence for medical care.

HD is a devastating progressive and terminal hereditary, degenerative brain disorder for which there is, at present, no cure. It attacks both the mind and the body, eventually rendering the person totally helpless. HDSA is the organization that battles this disease, supports research, educates caregivers, and provides both the HOPE and the action to win this battle.

Please endorse and support HDSA.

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.

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.

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.