Carlsbad Half Marathon 2012

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.

If the affected person has children, they each have a 50% chance of inheriting the HD genetic defect which compounds the stress. In my family, my father was the carrier of the defect, and two of his four children inherited the HD defect, including my sister pictured here who is currently suffering from the disease.

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. 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. The progression and severity of the disease varies from one individual to the next, even within the same family. My brother was severely affected with violent, uncontrollable muscle spasms, and died of starvation at age 63. My sister, Joyce, is now 77 and though suffering from milder spasms can still talk and even write short notes and cards.

 

New HD hope: Researchers Optimistic!

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. All ready, in part because of your generous contributions in the past, treatments for the symptoms of Huntingtons are improving. The difference in quality of life for many HD patients, including my sister compared to just a few years ago is remarkable. 

At the 7th Annual HD Therapeutics Conference at the Parker Palm Springs hotel in Palm Springs, CA, held February 27-March 1, researchers expressed optimism about finding effective treatments for Huntington's Disease. There are eight clinical trials poised to begin, and many more drugs under development. You can read about it here:

 

http://www.curehd.blogspot.com/2012/03/top-researcher-genuine-optimism-about.html

About my participation and yours

As many of you know, I started running on behalf of HDSA in 2010. The Carlsbad Half Marathon will be my tenth 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 father, my brother who died of HD in 2003 and my sister, Joyce. 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!