HDSA also leads in providing care for HD patients and their families at our 21 Centers of Excellence. HDSA's 12 regions and 37 chapters and affiliates and 150+ support groups help educate the general public and healthcare professionals. This dedicated circle of people provides networking and information and creates fundraising opportunities through a wide range of exciting and worthwhile events nationwide.
Riding for the cure.............Are we there yet?
Thank you to the following Corporate Sponsors: Centerplate, Elan, Elsevier, Horizon Fitness, Mc Donalds, Neurome, Sun Country Builders
Team 2CURE-HD website:
http://www.team2curehd.50megs.com/index.html
I married my wife, Sharon, after having watched my father-in-law battle and eventually succumb to Huntington's Disease (HD). I always had such hope that my wife would escape the disease. Together we lived life and have two beautiful daughters. As our daughters began getting older, my wife decided she needed to have the genetic test to determine is she indeed carried the gene for HD. We did not want to burden them with the heavy load of HD unless absolutely necessary. About four years ago my wife tested positive for the Huntington's Disease gene, but had no symptoms. Amazingly, she has channeled her emotions and energy in a positive direction. She stays on top of research, clinical trials, exercises, eats right and very importantly got involved with the local HD community. She is a member of the Advisory Board for San Diego's chapter of HDSA.Our family is at all of the events, volunteers, and raises money and awareness for HD. It is a true family affair, and the kids are growing up seeing HD firsthand. They in turn, reach out to their friends and teachers and educate them about HD. It's amazing! Sadly, my wife became symptomatic in August. She is in the very early stages and is so far having trouble with driving, balance and her judgment. This is just the very beginning of a long uncertain road. Despite the diagnosis, she is committed to putting a face to HD so people can understand better. In our family, HD is a daily topic of conversation and an open subject. Hopefully, this will allow our kids to continue to cope positively with being at risk as they watch the deterioration of their mom at a young age. Fielding a team for RAAM began as an idea that Scott and I tossed around for a while. It sounded like a great way to reach our goals, but we did not know if others would support the idea. It turned out to have the opposite effect on people. As soon as they hear about the nature of the event and our story, they feel compelled to help or donate. This event is a positive way for our family to cope, and at the same time allows us to educate one more person everyday and in the end raise money for HD research. We are desperate, so the sacrifices and pain that I will endure throughout the training and the race are insignificant. To purchase 2CURE-HD RAAM t-shirts: https://secure2.convio.net/hdsa/site/Ecommerce/1983844848?store_id=1581 To see the websites for fellow 2CURE-HD cyclists: http://www.firstgiving.com/bryan2cure-hd http://www.firstgiving.com/john2cure-hd http://www.firstgiving.com/scott2cure-hd For more on the Race Across America: http://www.raceacrossamerica.org/Default.aspx?tabid=1. To contact Renato (Sponsorship, HD, race info): rshaffer9@hotmail.com