San Diego Rock n' Roll Marathon
Welcome to my Team to Cure HD fundraising page! On behalf of my family and friends who are at risk for or currently suffering from Huntington's Disease, thank you for considering a donation towards finding a cure for this devastating genetic disorder.
About Huntington's Disease
Huntington's disease is a genetically caused brain disorder that causes brain cells to die and results in the progressive loss of muscle control. The long nerve cells controlling the arms and legs are affected first. This causes frequent, jerky, uncontrolled movements making everyday activities very difficult. As more brain cells die, shorter nerve cells become affected, and the person with Huntington's loses cognitive functionality and the ability to talk. People with Huntington's eventually become totally dependent upon others. In the final stages, the uncontrolled movements become ever more constant and erratic, the ability to eat and to swallow may be lost and the person essentially starves to death.
The progression of the disease is slow, taking ten to fifteen years from the onset of symptoms to reach the final stages and ultimate death. The short YouTube video gives some idea of the effects of the disease. Of course, this places a great deal of stress not only on the person with Huntington's but also on his or her family who may be the primary caregivers. If the affected person has children, they each have a 50% chance of having the HD genetic defect which compounds the stress.
About HD hope
In 1993, the HD gene was isolated and a direct genetic test developed that can accurately determine whether a person carries the HD gene. Since the discovery of the gene, scientific research has accelerated and much has been added to our understanding of HD and its effects upon different individuals. Much of this research is taking place locally in Carlsbad, and elsewhere in San Diego County. By continuing to invest in both clinical and basic HD research, progress is being made and perhaps soon a breakthrough in treatment – and a cure – will be forthcoming.
The San Diego chapter of the HDSA has formed a team to run in the 2011 Rock n Roll Marathon/Half Marathon with a goal of raising $20,000 for research. I have set a personal goal to raise $1500 toward this effort.
About my participation and yours
In 2010 with your encouragement and support I successfully completed the 2010 Carlsbad Half Marathon and La Jolla Half Marathon and raised over $1500. Encouraged by your support, I have continued running throughout this past year, and the Rock n Roll will be my seventh half marathon.
But more important than my physical commitment to the program is my commitment to raise funds for the Huntington's Disease Society in its effort to support research to develop a cure for this cruel disease.
I am running this race in honor of my sister (pictured), my brother who died of HD and my father who carried the Huntington's gene, and also died of HD. As mentioned above, children of a parent with HD have a 50% chance of inheriting the condition, and in my family, my brother and sister inherited the genetic defect. I personally have tested negative for the Huntington's gene.
Your continued sponsorship is such an encouragement, not only for me but also for those in our support group who are unable to run. Your donation going directly to research can truly make a difference.
Thank you so much for your support and generosity!