It's finally over! Still waiting for word from Marie about the convention, but her last journal entry for the ride has been updated. Thanks for all your support!

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Marie Nemec of Colorado Springs and Grand Junction CO, and Scott Springer of Saranac Lake NY will be riding coast to coast to raise awareness and funds for research to cure Huntington’s Disease. Beginning April 8 in Santa Monica CA and ending June 8 at Cape Canaveral FL, Scott and Marie will make a trip destined to change not only their own lives, but also thousands more. When the ride is completed, Scott and Marie will return inland to Orlando FL to attend the HDSA Convention June 9-11, 2000.

Huntington’s Disease (HD) is an inherited, degenerative brain disorder, which debilitates a person mentally, physically, and emotionally. Over a ten to twenty year period, the person with HD progressively loses the ability to think, speak, and walk. Symptoms are like a combination of those of Parkinson’s, MS, paranoia, and Alzheimer’s Disease. It manifests itself differently in each person, depending on which area of the brain’s caudate is degenerating. Although the gene was isolated in 1993, as yet scientists have not found a “cure.” At present, there is no effective treatment or cure. Although medications can give relief to some symptoms, no known drug can stop the steady progression of the disease. HD is hereditary. Each child of an affected parent has a 50% chance of inheriting the disorder and is said to be “at-risk.” The HD gene does not skip generations; if you do not inherit HD, you cannot pass it on. Onset generally occurs between the ages of thirty and fifty. However, children as young as two and adults as old as eighty have developed HD. It is conservatively estimated that at least 30,000 people in the U.S. alone have the disorder, with at least another 150,000 people at-risk of developing the disease.

The route will be a Southern one, through Southern California, Arizona, New Mexico, Texas, Kansas, Oklahoma, Arkansas, Louisiana, Mississippi, Alabama, and Florida. Scott and Marie will arrive in Orlando FL in time for the HDSA Convention June 9-11, 2000. One highlight of the ride will be passing through Okemah OK, the birthplace of Woody Guthrie, the folk singer/composer who died of HD in 1967. The journey will end near Cape Canaveral FL. By averaging 65 miles a day, they will complete the ride in two months.

In 1997, Marie discovered HD through meeting Carmen Leal, author of Faces of Huntington’s, on the Christian Writer’s Group List on the Internet. Carmen’s husband David has HD. Marie attended the 1998 and 1999 HDSA Conventions, and there she met Pat Pillis. Pat’s adopted son Kevin Benham had originally planned to ride with Marie, but three weeks before the ride was to start, he found that he wasn’t able to commit. His diagnosis of being HD gene positive weighed too heavy on him. Pat’s husband Paul works at Saranac Village Young Life camp, and that is where their path crossed with Scott’s. When Kevin withdrew from the ride, Scott stepped up to substitute for Kevin, standing in the gap, and put his personal plans on hold. 

What's New

June 12, 2000

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