Thank you for visiting our personal page! With your help, we can help HDSA achieve their mission to improve the lives of everyone with Huntington’s disease and their loved ones. Many thanks for your support, and feel free to tell others of our page, our goal, and our heart for HD and the families struggling with HD and its consequences.
For those who may be unfamiliar with “Bike for the Cure,” let me digress. In 1997, when the Internet was still in its infancy, Marie became aware of Huntington’s Disease through meeting Carmen Leal, author of Faces of Huntington’s and Portraits of Huntington’s, via the Christian Writer’s Group list. In June 1998, at Carmen’s invitation, she attended the 13th Annual HDSA Convention in Denver, CO. During those three days,she met many people with HD, caregivers, and people at-risk. She was deeply moved. Her Christian faith required action; “… let us not love with word or with tongue but in deed and truth” (1 John 3:18). She had to do something, but didn’t know what — yet.
Later on in the Fall of 1998, Marie met Charlotte Reicks, through a mutual friend. She and Evelyn Logan were planning a long-distance bicycle ride across America for the American Bible Society and the Lutheran Hour Ministries. The light went on! Marie asked them if she could join them, and ride for HD, and they said she could! The original duo became a trio, and in 1999 we rode from Santa Monica CA to Arlington VA, to the 14th Annual HDSA National Convention. “Bike for the Cure” became a reality and now a tradition.
At the Convention in Arlington VA, Marie met Pat Pillis’ son Kevin Benham, who wanted to join her in 2000 and ride across America. She agreed, and they began to plan, but it became increasingly obvious that Kevin could not keep the commitment, due to some of the soft symptoms of HD. Marie was so blessed when Scott Springer (a 20 something year old friend of Pat Pillis‘) stepped up and said he would ride, in Kevin’s place. Scott and Marie rode from Santa Monica CA to the Canaveral National Seashore outside Orlando FL. Sadly, Kevin’s HD progressed and he passed away in 2013 in New York State.
Bikin’ the Trails for HD is the 18th ride for HD; prior rides include two coast-to-coast rides Bike for the Cure ’99 and Bike for the Cure 2000, Border War on HD (Vancouver, BC, Canada – Tijuana, Mexico), Ramble ‘Round the Colonies (Manchester NH – Columbus OH), Trek Across Texas (Texline – Houston), Kick HD on Route 66 (Albuquerque NM – St. Louis MO and the KATY Trail), Coastin’ for HD (Wilmington DE – Atlanta GA), Midwest Meander for HD (Kearney NE – Milwaukee WI and Chicago IL – St. Louis MO), Rockies to Plains (Grand Junction CO – Oklahoma City OK), Cycle the Heartland (Clinton MO – Pittsburgh PA), Canyons to Cactus (Grand Junction CO – Phoenix AZ), Coastin’ to Carolina (Bar Harbor ME – Raleigh NC), Plains to Lakes (Belle Fourche SD – Minneapolis MN), Venture to Vegas (Grand Junction CO – Las Vegas NV), Pedal the Gulf for HD (Galveston TX – Jacksonville FL), and Bikin’ the Dixie Highway for HD (Sault Ste Marie MI – Louisville KY, and Bike for the Cure XVII(Albuquerque NM – Dallas TX). Over 23,000 miles have been pedaled, through parts of 47 states and Washington DC. Our fundraising goal is $20,000 to bring the total raised to $660,000.
These past seventeen rides would not have been possible without others who have also shared in the riding and fundraising. Past riders include Scott Springer (see above), Amanda Adams (Border War on HD), John & Marie Elsner (Ramble ‘Round the Colonies), Sandy Lozier (Midwest Meander for HD and Rockies to Plains), Heather Chynoweth Farmer (Venture to Vegas and Pedal the Gulf for HD), Hope Chynoweth (Pedal the Gulf for HD), Devon Walker (Pedal the Gulf for HD), Kathy Lindner (Bikin’ the Dixie Highway), Shana Martin Verstegen (Midwest Meander for HD), Shane Williams (Border War on HD) and Sara Jaramillo and her then seven year old daughter Cassie (Rockies to Plains). Marie’s wonderful husband Ron has been “the wind beneath my wings” over the years, forwarding the Daily Messages on e-mail to now about 200 folks and managing our website. Heartfelt gratitude to Jennifer Hickok, who designs a new website each year.
Each year, the ride ends at the site of the HDSA National Convention. This year, the National Convention is in Baltimore MD. In Pittsburgh PA in 2008, Marie was honored as the recipient of the National Award for Outstanding Fundraising.
This year’s ride is lovingly dedicated to the memory of James Crumly (1969 – 2015). James was a young man who was born, raised, educated, worked and passed away in Grand Junction CO. He died from complications of HD. James inherited HD from his father Lonnie. HD continues to affect his older sister Genevieve. James was a poet as well. Posthumously, a book of his poems entitled Where is Your Smile? was self-published by members of the Western Colorado HD Support Group. Contact Marie to purchase a book; cost is $10.
Thanks to all past donors who have given to help find a cure! These rides have changed our lives for the better. Marie’s grafting into the HD Community (since it does not run in her family) has afforded her and the other riders opportunities to meet the most amazing people we know, and to see so much of the country we love!