On your mark…..get set…..Don’t Run!
Instead, find a comfortable place in your house to relax and participate in the second annual Couch-Potato Marathon 2005, a fund-raiser sponsored by the UCSD Huntington’s Disease Clinical Research Program (http://hdcrp.ucsd.edu/hd/default.asp) during May’s Huntington’s Disease Awareness Month.
Designed tongue-in-cheek for San Diego’s non-runners, the pseudo-marathon seeks to raise funds for Huntington’s Disease research and clinical services offered through the UCSD School of Medicine. Designated as a Center of Excellence by the Huntington’s Disease Society of America, the UCSD program was one of the first centers west of the Mississippi to receive this designation for its treatment and research center, which is directed by Jody Corey-Bloom, M.D., Ph.D., UCSD professor of neurosciences.
A fatal, degenerative brain disorder that primarily strikes men and women between the ages of 30 and 45, Huntington’s Disease causes involuntary movements, severe emotional disturbance and cognitive decline. As their bodies and minds deteriorate, affected individuals die from complications such as choking, infection or heart failure. Affecting as many people as hemophilia, cystic fibrosis or muscular dystrophy, Huntington’s disease has been diagnosed in 30,000 Americans; with another 150,000 at risk because family members have a 50 percent chance of inheriting Huntington’s from an affected parent.
“Huntington’s Disease is a devastating illness for the patients and families affected by it,” said Corey-Bloom. “It affects people in the prime of their lives, diminishing the individual’s ability to walk, think, talk, and reason. Eventually, it leads to complete dependence upon others. The financial, social and emotional burdens experienced by these families are profound.”
The Couch Potato Marathon was started in 2004 to improve the lives of those affected by Huntington’s Disease by supporting patient care, family services and clinical research. Last year, $4,810 was raised.
In the invitation announcing this year’s Couch-Potato Marathon, the UCSD staff notes that participants and sponsors have the choice of several donation categories:
- $1 per kilometer sponsorship for every kilometer not run
- $25 for not having to pay a registration fee
- $50 for not having to purchase new running shoes
- $100 for not having to pay for a massage after the race
- $250 for not having to hire a personal trainer
- $500 for not telling your loved ones know just how out of shape you really are
On a serious note, the non-marathon invitation describes how donations will be applied to help improve the lives of those affected by Huntington’s Disease:
- $25 will provide transportation to/from a clinic appointment
- $75 will provide 3 hours of respite for a caregiver
- $100 will provide one speech and swallowing evaluation
- $200 will provide one medical appointment
- $300 will provide one week of daycare
- $500 will provide the ability to purchase one new wheelchair
- $1,000 will provide one MRI scan
Among the UCSD School of Medicine services supported by the fund-raiser are genetic testing and counseling, diagnosis, medication for movement disorders, cognitive and psychiatric evaluation and treatment, nutritional counseling, caregiver and social services, and physical, occupational and speech therapy. Research programs investigate the cognitive deficits associated with the disease, the temporal sequence of cognitive and behavioral changes associated with specific brain structures, the function of certain brain circuits in subjects who are asymptomatic but genetically at risk for Huntington’s, and complex motor function in conjunction with related behavioral reaction time.
Additional information about the UCSD Huntington’s Disease program, including information on donations, is available to those calling 858-622-5854; information on the Couch Potato Marathon is also available on the HDRP web site at http://hdcrp.ucsd.edu/hd/fund_raising.asp .
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