On Saturday, July 13, I will be walking in the Walk for Hope in honor of my dad. For those of you that don't know, my dad was diagnosed with Huntington's Disease 5 years ago. Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities and has no cure. Not only does it not have a cure but every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Which means if I have the gene Talen, Cash & Sailor have a 50/50 chance of carrying the gene as well. Today, there are 30,000 symptomatic Americans (my dad) and more than 200,000 at-risk of inheriting the disease (me).
The Huntington’s Disease Society of America is a not-for-profit organization dedicated to improving the lives of everyone affected by Huntington’s disease. Not only are they leading the efforts in finding a cure, but as my dad's health declines, we will have access to so many resources through them and that is why we choose to support this organization.
If you are interested in joining TEAM ROGER! please register below. If you cannot participate, please consider making a donation to my personal fundraising page by clicking the ‘Support Me’ button at the top of this page.
Thank you for your support -- Sara
I've had people ask me if I plan to get tested so I know if I have it. Soon after my dad found out he had it I did meet with the genetic counselor on his team of doctors and I decided at that time that I did not want to be tested. The suicide rate of those that know they have it is very high, and I dont feel like me knowing one way or another would change how I live my life. As the kids get older and they understand more what it all means I will get tested, so they know. But until then I have no plans of getting tested.