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!
Take a look at What's New in our web.
A group welcomes Marie Nemec in Frederick, Maryland.
Click for larger picture.
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 Huntingtonís 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.
Huntingtonís 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 Parkinsonís, MS, paranoia, and Alzheimerís Disease. It manifests itself differently in each person, depending on which area of the brainís caudate is degenerating. Although the gene was isolated in 1993, as yet scientists have not found a ďcure.Ē 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 ďat-risk.Ē 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
Huntingtonís, on the Christian Writerís Group List on the Internet.
Carmenís husband David has HD. Marie attended the 1998 and 1999 HDSA
Conventions, and there she met Pat Pillis. Patís adopted son Kevin Benham had
originally planned to ride with Marie, but three weeks before the ride was to
start, he found that he wasnít able to commit. His diagnosis of being HD gene
positive weighed too heavy on him. Patís husband Paul works at Saranac Village
Young Life camp, and that is where their path crossed with Scottís. When Kevin
withdrew from the ride, Scott stepped up to substitute for Kevin, standing in
the gap, and put his personal plans on hold.
June 12, 2000
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