A Heart As Big As Alaska

Marie Nemec by John Woo

I discovered a treasure named Marie one year before I met her. Actually, I met her on-line, in a Christian Writers' Group, before I finally saw her face-to-face. To some people, meeting on line doesn't qualify as the real thing, but though Marie lived in Colorado, and I in Florida, we had a strong friendship even before we hugged each other at the Denver airport.

Our friendship grew as we talked about our writing projects. Faces of Huntington's was my first book and was I ever excited. In her quiet, unobtrusive way, Marie began asking questions about Huntington's Disease. Information was exchanged as our friendship grew.

As the book release date drew near, Marie's husband got a job transfer. Since they live in Grand Junction, Colorado, this meant a temporary separation while her husband, Ron, found an apartment in Colorado Springs. Ron moved about the time my books were ready for shipping from the publisher in Canada. The national Huntington's Disease Society of America's had its convention in Denver, and Marie graciously offered me space in their apartment so I could have my publisher send a quantity of books there, in Colorado Springs. This represented a huge savings; I would not have to lug eighteen boxes from Florida. All this and we'd never met!

Marie drove all the way from Grand Junction, picked up got the boxes, then met me at the airport and became my personal assistant for the next three days. Marie sold books, made change, answered questions and soon became indispensable. All the while, she quietly soaked up information about Huntington's Disease and made several friends. I could never have made it without Marie, but each time I said thank you, she said, "No, thank you!"

Recently, she told me that her life has never been the same since attending the HDSA convention. A few brief months before she had never heard of HD, and now her life is changed. I knew it could be a life changing experience for those with HD or in an HD family, but Marie is not affected personally by Huntington's Disease; she has never even met my husband, Dave.

Marie Nemec is a woman with a heart the size of Alaska. She told me she wants to play an active role in finding a cure for the thousands of people who daily live with this devastating disease.

An avid biker, Marie decided to raise funds for HD through biking. She and two friends, Charlotte Reicks and Evelyn Logan, made a trip that is destined to change not only their own lives, but thousands more.These three women rode their bicycles over 3,000 miles.

Marie and her friends followed the old "Route 66" through California, Arizona, and New Mexico. They will continue through Colorado, Kansas, Missouri, Kentucky, West Virginia, Maryland, and into Arlington,Virginia, for the 1999 HDSA convention. By averaging approximately fifty miles a day, the trio reached their goal of 3,000 miles in two months and raised over $7,000 for the cure.

I can't imagine riding a bike across America for a cause that affects my family, much less one that doesn't. But one ride wasn't enough.

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.

The duo began their ride on April 8 in Santa Monica CA and will end on June 8 at Cape Canaveral, FL and on to Orlando, FL to attend the HDSA Convention June 9-11, 2000.

The route is a Southern one, through Southern California, Arizona, New Mexico, Texas, Kansas, Oklahoma, Arkansas, Louisiana, Mississippi, Alabama, and Florida.

Marie created HD awareness and raised much-needed research funds. But, as much as I appreciate her willingness to ride 6,000 miles for Huntington's Disease, there is something else I treasure even more. Besides sharing her friendship with me and biking for a cure, Marie does something even more important. Marie prays.

Sometimes, the burdens of the world seem overwhelming. Marie aches for those who hurt and wants to solve the world's problems single handedly. She probably wishes she had millions of dollars to help those in need. She doesn't have the money and she can't solve all the world's problems, but she can and does pray. There is really nothing more significant that anyone can do for others than to pray for them. Riding a bike 6,000 miles comes close, but to Marie, her prayers are even more important.

I'm so proud of Marie. And I'm honored to call her my friend. I'm thankful that God led both Marie and I to the Christian Writers' Group. While I've learned much about writing and Christian publishing through the list, I've also learned that God does care and does provide friends for us in creative and timely ways. One reason I know this is because He taught me-through Marie.

Adapted from a story in Pinches of Salt, Prisms of Light (Essence, 1999) http://www.writerspeaker.com/salt.html and Marie's Bike for the Cure Web site at http://www.angelfire.com/journal/bikeforthecure

Carmen Leal