HDSA as helped my family a lot in learning more about Huntington's Disease and connecting the community together nationwide.
My childhood friend got married and had two children. Years into the marriage, her husband was diagnosed and has been getting worse continually - he cannot be the dad to their two young children he wanted to be and can't participate in their lives normally due to his Huntington's. Now the youngest child has been diagnosed. Families like theirs need attention to be paid to organizations such as HDSA in order to help them cope and help to find a cure. I know HDSA has been one of the pillars that has kept them going and I thank them for being a support system for them. It's such a little talked about disease that has such devastating effects.
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.
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.
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.
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.
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
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.
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!
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
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.
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.
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.
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!
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.
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.
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.
They have useful and uplifting information readily available for those who are affected by this terrible disease.
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!
Family members with Huntington's, other's with the gene. Support, education, a chance to make a difference!!!
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.
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.