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.
HSDA is a compassionate, thoughtful, profoundly helpful organization. The people there are the overachievers that go above and BEYOND to make you feel safe, loved, cared for and understood. With such a complicated, scary disease that still has very little national support, HSDA continues to fight tooth and nail to be recognized, and to recognize those that go through or are touched by this awful sickness. I am grateful to the people who have devoted their lives to this cause - they are angels and saviors to so many.
It is just wonderful to watch the progress of HDSA from when it developed out from one of it's origins CCHD. The level of organization from fund raising to encouraging scientific research has been remarkable.
HDSA has been an incredible resource for 15 years for my family. They deliver what they promise, are dependable and accountable across the board! I have worked with many non-profits both as a client and board memeber and think HSDA represents among the very best.
I have served as Treasurer for a local chapter of the Huntington's Disease Society of America for over a dozen years. The organization is totally dedicated to find a cure and to improve the quality of life for afflicted persons. I have always been impressed by the dedication of all the individuals I've has the pleasure of working with. They are dedicated and hard working!
HDSA is a wonderful organization. I have a strong family history of Huntington's Disease and I am HD gene positive, so they have been a great source of knowledge. They also plan many events for Huntington's patients and families that are great as well.
My husband has Huntington's Disease. Without the help and support of the HDSA and the local Center of Excellence, he would probably not be alive today. Through the Center of Excellence, he has access to neurologists and psychiatrists that specialize in HD and are able to treat him appropriately. He has also participated in research studies to help better understand the disease and hopefully find a treatment and cure.
I have worked to fundraise money for research for HD and it always amazes me how extensive the collaboration is in this field. The researchers really have good ties to the donating community and are happy to share their work with us in small talks at fundraiser walks as well as at our annual regional conventions. Very few of the other organizations that I have fundraised for tend to have that kind of personal connection with their donors but HDSA really makes me feel like the work that I do for them, whether it be fundraising or advocacy, really makes a difference!
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.
HDSA is helping raise awreness in communities and offers support to people and familes effeced by this horrible disease. Unless you are personally faced with HD or caring for a loved one with HD, there is no way to make someone understand how inense this disease is. It is passed on 50/50, there are no drugs to slow progression and it robs people of their lives or loved ones lives. We need HDSA to continue these efforts and educate people about the true HD story. I am a 35 year single mother who tested positive. I have two children at risk, my hope for them is treatment and a cure. Please realize the importance of this group.
I have a lifetime friend who is gene positive with Huntington Disease as well as so far her oldest son is also. She has three other children. Who might be too. This organization can keep families updated on the lastest things being done in research and can help them get in touch with much need support groups and services
I volunteer for HDSA all the time and I can honestly say that they are 100% about the cause and helping people affected by Huntington's Disease. HDSA works hard to help those in need and are constantly working on growing as an organization to better themselves and work towards the mission!
I'm a friend of the Cuccinotto family in Illinois. Their family has been has been hit hard with this dreaded disease and they work tirelessly in their fundraising efforts to increase awareness and research for HDSA. I believe this organization should receive the 2012 Top-Rated Award
The staff of the Huntington's Disease Society of America is supportive and incredibly helpful. They do amazing work through their regional offices to help raise awareness and promote education of this devastating disease. Their Faces of HD campaign in May made a huge impact on everyone. As a volunteer for this organization, when planning our Team Hope walk for the past six years their staff - regional and national - came to our aide in so many ways. They assist with organization, ordering and promotion. They also are a positive influence in their communication both with volunteers and with the public. The annual conference is another way they get the message out. The workshops and camaraderie are invaluable. I like the webinars they e-mail out as well. I can log into them on my lunch break at work and get the advice our family needs in a convenient setting. HD is a very difficult disease and affects SO MANY PEOPLE. HDSA is a beacon of hope for our families and it is an honor to work with them as a volunteer. Becky Black, Missouri
While brain-wasting diseases like Alzheimer's and Parkinson's are well-known to the public, most people unaffected by it have never heard of Huntington's Disease. For those who ARE affected by it or whose loved ones are affected by it, this can feel lonely and isolating. HDSA provides a positive, healthy and hopeful place for HD families to go to for hope. HDSA does marvelous work for HD families in many ways: creating a sense of hope with research towards a cure, outreach to families affected by it, and by engaging gene-positive and at-risk people through support groups, fundraisers and access to the latest research information.
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.
When dealing with a genetic disease where you have a 50% chance of inheriting, it is important for others to realize the importance and impact of HDSD. My entire family has been affected by this terrible disease however HDSD has kept me informed on ways to care and financially support my loved ones. My life would be entirely different. Literally, I would have homeless family members due to the cost of care and "treatment" however HDSD has helped my family find resources to make a better situation out of a horrible diagnosis.
I am new to the Delaware Chapter Board of Directors for HDSA. I feel that HDSA had moved in great strides in helping to educate and care for those suffering and the families of those suffering with Huntington's Disease. We have lost several cousins to this disease and it is a heart breaking demise for humans to struggle with. Please consider HDSA for your top great non-profit causes.
I am the caregiver for my daughter, who has Huntington'sDisease. I was also the caregiver for my husband who passed away, having the disease H.D.S.A. has helped me in living through these terrifying periods. It is very frightening to see the people you love succumb to this horrible disease, but the society educates and give me as much support as possible. I have learned alot and am still learning more. They have or sponsor many fund-raising events. They also have seminars and conventions to help support and educate interested people, with many knowledgeable doctors and researchers. I cannot imagine what affected people of Huntington's Disease would do if there was not the H.D.S.A.