BIKING FOR CADASIL BY BARBARA SCOTT    8-17-07

Opening day of the 207-mile Seattle to Portland (STP) bicycle ride found me too anxious to concentrate on the final preparations of equipping my bike for the ride. I was too nervous to eat, apprehensive of what the experience of next two days would be like for me and concerned that I would somehow let down all the generous supporters of the CADASIL foundation if I did not complete the ride.  My family and I have always enjoyed bike riding and months before the annual STP, I decided to challenge myself by riding in the event to raise money for CADASIL research. In between training rides for the STP, I actively worked to raise funds. At first, I intended to just hand out flyers and brochures. However, after discovering that many people were deeply interested in helping to fund education, research and finding a cure, I found myself talking about the disease to groups.  Typically, I was invited to speak in people’s homes and share my personal experience with CADASIL. The response was always gratifying, not only financially as guests willingly made donations but also emotionally.  Some of the attendees would hear about the disease and state that they had family members who exhibited some of the same symptoms. Because of my presentation, they would encourage those family members to be checked out.  My heart was touched by the genuine interest in the disease, their generous contributions and the realization that I had done my small part to further education about CADASIL. 

I was happily surprised to find that my preconceived notion that a 207 mile bike ride would be grueling was quickly disproved. “Surprised by joy in the journey” is something we often say in our family and it was so applicable to the STP. The ride was astoundingly achievable – one pedal at a time. That is not to say it didn’t have its challenges but we were prepared.  Once we began the ride and met so many people and saw so many happy faces, I relaxed. Riders were chatty, helpful and everyone had the same goal of completing the ride in Portland. The weather was spectacular and I was overcome by the beauty of the surrounding countryside as we rode on the back roads of Washington and Oregon.  I had a support team of six riders including my husband Gary and our son Karsten plus three dear friends, Mary, Pat and Ericka. Although the Cascade Bicycle Club always provides complete support for the riders along the way, we thought it best to have a personal sag wagon follow us in case my health deteriorated. The wagon was a real boon, meeting us at every 25 mile stop with cold drinks, food and bike maintenance.  At one point, I did experience a migraine, a common symptom of CADASIL. But after taking my medication and a resting in the sag wagon for a few miles of the ride, I felt well enough to get back on my bike and was able to cross the finish line without further incident.

What an exhilarating moment that was!  I still tear up to think about it and to realize that in spite of the disease, I did it!  We were greeted by a cheering throng and by our personal group of friends who celebrated with us on the excitement and pride of accomplishment of completing the two day ride. I have so much gratitude to all of you who gave so generously to my ride in support of the CADASIL Foundation. With $1300.00 in donations, I raised so much more than I ever thought I would. I offer my humble thanks and blessings to everyone who listened to my story about how the disease has affected my life and how it impacts the lives of others around the world.

As for the future – am I planning to ride the STP next year?  You bet!  My question and challenge to you is, will you ride too? Together we can ride to raise awareness of this disease, together we can raise money for research and together we can move towards finding a cure.  Come join me!

.