Marie met Carmen Leal on the Christian Writers Group List on the Internet in spring 1997. Through Carmen, I was introduced to HD. By Winter 1997-98 I purposed to complete a 3000-mile bicycle ride across America, to raise awareness and funds for HD. I joined Charlotte Reicks and Evelyn Logan, two friends from Grand Junction. They were riding for the 1999 Year of the Bible and the Lutheran Hour. The Bike For The Cure 99 raised $7100 for HD research. The path followed was Route 66 from Santa Monica CA - Santa Fe NM, the Santa Fe Trail from Santa Fe to New Franklin MO, the Katy Trail in MO, then a path through MO, IL, KY, IN, WV, MD, and VA, ending the ride in Norfolk VA.

Influenced by Kevin Benham's expressed interest in riding across America in 2000, I began to plan Bike For The Cure 2000. Kevin was diagnosed gene positive in June 1999. As time passed, three weeks before the ride was to begin, Kevin found that he wasn't able to commit to doing the ride. His diagnosis weighed too heavy on him. When Kevin withdrew from the ride, Scott Springer stepped up to substitute for Kevin, to stand in the gap, and put his personal plans on hold. Scott became aware of HD through Pat Pillis, Kevin's adoptive mother, and her husband Paul. Their story is found in Carmen Leal's book "Faces of Huntington's" as "A Mother to Four." A Southern route was taken, through CA, AZ, NM, TX, OK, KS, AR, LA, MS, AL, and FL. The ride ended at the Canaveral National Seashore near Titusville FL. $39,500 was raised ($18,000 was matching funds from HDSA's Generation 2000 fundraising campaign). A donation of close to $2000 was made to The Hereditary Disease Foundation. Also recipients were the Hereditary Neurological Disease Foundation and the Huntington's Society of Canada.

This Year's Ride will be a Border War on HD, from Vancouver BC through Western Washington State to Oregon, then out to the Pacific Coast. Breathtaking cliffs, redwood forests, lighthouses, beaches, and a rugged coastline are anticipated. We will pass through the redwood forest, the "Avenue of the Giants," in Northern CA. This fits with Woody Guthrie's song "This Land is Your Land." Woody Guthrie died from the effects of HD in 1967.

The ride will end in Tijuana MX. Friends and family will gather at Border Field State Park in Imperial Beach then ride about 5 miles to the border crossing at San Ysidro CA and cross into Tijuana.

Ride starts Monday, May 21 in Vancouver BC and ends Thursday, June 28 in Tijuana MX.

What Is Huntington's Disease?

Huntington's Disease (HD) is a devastating, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington's Disease profoundly affects the lives of entire families: emotionally, socially and economically.

Named for Dr. George Huntington, who first described this hereditary disorder in 1872, HD is now recognized as one of the more common genetic disorders. More than a quarter of a million Americans have HD or are "at risk" of inheriting the disease from an affected parent. HD affects as many people as Hemophilia, Cystic Fibrosis or muscular dystrophy.

Early symptoms of Huntington's Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination.

As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.

HD typically begins in mid-life, between the ages of 30 and 45, though onset may occur as early as the age of 2. Children who develop the juvenile form of the disease rarely live to adulthood. HD affects males and females equally and crosses all ethnic and racial boundaries. Each child of a person with HD has a 50-50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease. In 1993, the HD gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the HD gene. The test cannot predict when symptoms will begin. However, in the absence of a cure, some individuals "at risk" elect not to take the test.

Since the discovery of the gene that causes HD, scientific research has accelerated and much has been added to our understanding of Huntington's Disease and its effects upon different individuals.

By continuing to increase our investment in both clinical and basic HD research each year, breakthroughs in treatment and a cure will be forthcoming.