Hoop-A-Thon to fundraise for Huntington’s Disease research
By Emily Tice
Aug. 23, 2009 10:39 p.m.
Alice Wexler, a research scholar at UCLA who has written two books on Huntington’s Disease, said there was a time when the disease was heavily stigmatized and physicians saw no purpose in treating it.
“It was so hopeless. They thought that people should get sterilized and not marry,” she said.
Wexler is on the board of directors for the Hereditary Disease Foundation, which her father founded in the sixties after her mother was diagnosed with Huntington’s disease.
“The 1960s were a decade of activism: civil rights, women’s rights ““ the idea of self-help, people could be active on behalf of their own needs,” she said.
Wexler said that the myriad of advances in science and medicine, coupled with the climate of social change, gave her father the idea that if he could gather enough resources and support from the scientific community, one day a cure could be found.
UCLA will be hosting the L.A. Hoop-A-Thon, a fundraiser for Huntington’s Disease on August 28 to raise money toward finding a cure.
Sponsored by the Huntington’s Disease Society of America, UCLA men’s basketball coach Ben Howland and his wife Kim are honorary co-chairs for the event, which will take place in Pauley Pavilion from 6 to 10 p.m.
UCLA basketball players will also attend the fundraiser, which features a free-throw contest, a silent auction, and food from various Los Angeles restaurants, according to the coordinator of the Hoop-A-Thon, Natalie Carpenter.
Howland said that he wants to help those affected by Huntington’s Disease as well as raise support for the issue after losing his father-in-law to Huntington’s.
Yvette Bordelon, an assistant professor in the Neurology and Movement Disorders Program at UCLA, said that Huntington’s Disease can be difficult on families because the disease first makes its appearance in middle age, when the patient has created a family who must then witness their slow decline for 15 or more years.
Huntington’s Disease is a debilitating disease which destroys the neurons in the brain, impairing the individual’s motor abilities and cognitive functions, and ultimately taking from them the ability to walk, speak, and even think, Bordelon said.
“Families lose their loved one, the person that they knew, before they’re even gone,” she said.
Scientists once thought a cure was fast-approaching when, in 1993, it was discovered that Huntington’s Disease was caused by a single gene, named Huntingtin by researchers, Bordelon said.
“Everyone thought that was the end, but the Huntingtin protein has a normal function everywhere in the body, and there are multiple pathways,” she added.
However, she added that Huntington’s Disease is a purely genetic disease, unlike other neurodegenerative diseases such as Alzheimer’s and Parkinson’s, and that understanding the pathway that Huntington’s Disease operates on will lead to better understanding of other diseases, and possibly cures for those will follow as well.
Howland said he believes that there is a chance a cure will be found for Huntington’s in the next decade, and he hopes that events such as the Hoop-A-Thon raise public support for the issue, and also the necessary funding.
“It’s one gene. There’s a good chance,” Howland said.
Teams of ten can enter the free-throw contest for $950 by registering their team online at www.hdsala.org by August 27. Individuals can also attend the event by paying $125 either at the door or online.
