I attended the convention for the first time this summer and was very pleased with how much information was available to me. thank you so much, keep up the good work!
HDSA is a nonprofit organization that takes a grass roots approach to spreading awareness and raising money to deal with different issues that affect the families who affected by this debilitating disease. From the establishment of unique medical facilities that help individuals to understand and address the unique psychological and physical conditions created by the disease to fighting on Capital Hill to have bills passed to get people affect by HD the proper health care at the right time, HDSA and its members are at the forefront of trying to help provide the "hope" and "help" need in the the HD community. I am proud to be a part of it!
HDSA is a truly amazing organization. It provides a sense of clarity and comfort to families affected by HD when things are seemingly spiraling out of control. They provide information and resources we are desperately seeking, and show you that you're not in this alone. They definitely deserve the recognition.
HDSA has helped families and patients themselves with the devastating effects of HD. They offer wonderful programs for families to help educate caregivers and also support for the patient. They have also offered great programs for the children of HD families to deal with this hereditary gene.
They have made great progress in regard to stopping the HD Gene but so much more needs to be done to help the thousands of people effected. One day before I leave this earth I hope to read they have found a way to stop HD and that treatment can be giving to all the patients and family members that tested positive for the gene.
We have a 36 year old daughter with Huntington's. This non-profit page provides us with comfort and information. There are other HD families out there and this helps us with perspective.
The Huntington's Desiese Society of America is a superb organization. I attended parts of the conference in Jacksonville with a family friend. Everyone was welcoming, informative. There was a great talent show and the participants, MC and other volunteers there were passionate and enthusiastic about fighting for their cause and raising money to find a cure. I met kind people at the conference and was invited to attend a support group to get more information and be more aware, as I am a teacher. The people there as well as th group leader were welcoming, kind and generous!
We need more research to help find a drug that will help people with Huntington's which is such a dipilating disease. Please support the foundation which is full of useful information and keeps us posted with the latest status and updates us on the newest research and information on helping our loved ones with Huntingtons which includes my husband.
All of the people I have dealt with at HDSA have been caring and understanding. I have attended several conventions and they have been very inspiring. Its so nice to gather so many people who are going through the same issues my family are going through. Thank you for all that you do.
I am a mother of three children who are at risk for this disease HD and lost my husband because he battled it for so long. We live in north Carolina. This is a horible disease!! I am only bringing this up becuase it seems like no one else will or has yet but the HDSA needs to be reviewed about their donations and research that they say they are doing for us in the community. They were just looked at there is a problem with the way they say the money is going to. I did support them and did walks but I will not anymore until the truth comes out. More people are asking questions and want to know what is going on with this company who says that they work for us in the HD community. Please I ask that you look into this.
It is very important that organizations for Huntington's Disease be recognized and supported, particularly since this is an always fatal "orphan disease" which genetically runs in families, and therefore doesn't have as much money funneled into it as some of the more known diseases. I have lost most of an entire side of my family due to this devastating disease.
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.
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.
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!
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
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