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.
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.