2018 is a milestone year for Marie Nemec and me—two bicycling grandmas about to venture on our 20th long-distance bicycle ride, alongside three other riders, for the Huntington’s Disease Society of America’s (HDSA) annual convention on June 7-9 in Los Angeles.

This year also marks the 50th anniversary of the HDSA and the 100th birthday celebration of its founder, Marjorie Guthrie, who started this now worldwide organization after her husband, famed folk musician Woody Guthrie, died from Huntington’s Disease (HD).

What is Huntington’s Disease?

HD is a neurological disease resulting from a defective gene passed from parent to child at birth—they have a 50 percent chance of inheriting it. The gene remains dormant and can activate at various ages. The symptoms are gradual and progressive, usually starting with changes in memory, emotions, erratic behaviors, inability to reason, anger and depression. The patient eventually loses the ability to walk, talk and swallow, and becomes totally dependent on others for care. There is no cure.

There have been breakthroughs in research, with a recent announcement of a drug that may potentially lower the levels of the mutant protein in the cerebrospinal fluid. HDSA said, “This is the most progress of a treatment for the root causes of HD that has ever been made.”

Bike for the cure

Marie founded Bike for the Cure in 1997 when she met Carmen Leal, an author self-publishing “Faces of Huntington’s,” a collection of stories, essays, poems and quotes of people somehow affected by HD.

Leal’s husband had HD, and that year, she invited Marie to meet her at the HDSA convention in Denver. There, Marie learned more about the disease and the struggles of those affected by it, and was motivated to take action and raise funds for HD research and family support.

In 1999, she and I bicycled across America, raising funds for the cause. Marie has traveled on all 20 rides for HD, but I am no stranger of bicycling for charity. Bike for the Cure has raised $718,100 to date.

On this year’s ride, we’ll be joined by Heather Farmer of Grand Junction, and sisters Mary Ann Taylor of Truckee, California, and Sherri Kole of Lewiston, Idaho, on our 11-day ride, which starts in San Francisco on May 28. We travel over the Golden Gate Bridge to Half Moon Bay, then continue mostly on Highway 1 down the Pacific coast for 500 miles to Los Angeles.

Marie and I are familiar with this stretch, as it was part of our 2001 trip from Canada to Mexico, which spanned over 2,000 miles. Those were the days!

A few things have changed over the years. For one, we used to carry our gear ourselves, but with me in my 80s and Marie in her 70s, our gear is now transported via van, and our daily distances have been reduced from 70-79 to 30-60 miles.

We’ll also be traveling by van for safety’s sake, since some stretches of Highway 1 were destroyed by mudslides in 2017, necessitating a detour on a steep and narrow two-lane mountain road.

But what hasn’t changed is the kindness and generosity of churches and their members who host us overnight—we wouldn’t be able to make this trek without them.

Being that there are no towns or churches along Big Sur, the 90-mile stretch through the Santa Lucia mountains, we reached out to a few lodges who gratefully donated a free overnight stay in a yurt (a more comfortable modern lodging option that’s kind of a cross between a tent and a cabin) to all five cyclists.

How you can help

The public is invited to a free breakfast send off at Sherwood Park from 9-10:30 a.m. on May 19 for the three Grand Junction bicyclists. If you’d like to help local and national HD families by contributing to this year’s ride, donate at www.hdsa.org/bikeforthecure, or email Marie at [email protected]. You can also purchase ride T-shirts ($20 for short sleeves or $25 for long sleeves). For ride updates and more information, visit www.bikeforthecure.org.

The Western Slope Huntington’s Support Group currently supports 10 local HD families. Members meet monthly at 6:30 p.m. on the last Tuesdays at First United Methodist Church.