Thank you for visiting our team fundraising page! We are walking to raise money and support HDSA, the premier non-profit organization dedicated to providing people with HD and their families the help for today and hope for tomorrow that they need and deserve.
My sister was diagnosed with Huntington's about 5 years ago. Not only is she an amazing woman, she is a special sister; mother, wife, friend and grandmother who continues to stay positive. Her faith in God and the support of family and friends gives her strength each day but knowing HD is a progressive disease with no cure and limited treatments and medications for symptoms can be overwhelming at times. Currently her uncontrolled movements, abnormal posture, diminishing cognitive abilities and changes in communication, judgment and thinking have made it difficult for her to maintain the life she once knew and we all mourn (see below for more in-depth information about HD and our family).
Please mark your calendars and join our team on Saturday, September 22nd as we walk to make a difference. Just register and I will be in touch! You can find out more information about the walk or how you can make a donation on our personal fundraising page by clicking the ‘Donate’ button at the top of the page or visit www.hdsa.org to learn more about HD and The Huntington’s Disease Society of America. Thank you!
We can give time, we can give our expertise, we can give our love or simply give a smile. What does that cost? The point is, none of us can ever run out of something worthwhile to give.” Steve Goodier
Our father had Huntington’s disease, but because he died in a tragic accident before he exhibited symptoms we were unaware that he would one day get sick with HD, the disease that many say, have symptoms of having ALS, Parkinson’s and Alzheimer’s – simultaneously. Finding out you have a hereditary disease in your family of this magnitude was not easy. Family members at-risk for the disease face a difficult choice about genetic testing and given the current absence of effective treatments or cure many see no benefit in knowing while others want to end the uncertainty. The decision to test is intensely personal and there is no "right" answer. I could not live with the uncertainty and soon after my sister’s diagnosis; I received genetic counseling, and was tested. It is hard to explain the equal amounts of relief and guilt that I had upon hearing I do not have the expanded gene for HD.
Approximately 30,000 Americans have HD, but the devastating effects of the disease touch so many more. Although my sister continues to impress me each day and her happiness and smile can only be described as contagious, there is the possibility that someone in her family could have this expanded gene. We meet the uncertainty head on knowing that life doesn’t offer anyone certainty. The Huntington’s disease Society of America has been a tremendous avenue of support and our family looks forward to walking together to support it.