The Rocky Ride for BBS Research
September 29th, 2019
I love to cycle. Lucas loves soccer. On September 29th, Lucas and I have the opportunity to bring our two loves together.
The past few years, Lucas has been invited to play on a competitive soccer team coached by Tim Ogden. Coach Tim’s son Nathanael has a rare disease called Bardet Biedl Syndrome (BBS). Each year, Tim and Nathanael ride a tandem bike from Exton to the Philadelphia Museum of Art and run up the steps to raise funds to support BBS research. They call it the Rocky Ride. This year, Lucas and I are going to join them on the ride, tandem and all!
You can read more about BBS and Lucas’ soccer coach, Tim Ogden and his son, Nathanael below.
About Nathanael and BBS
Nathanael is 13 years old, and will be entering 8th grade this fall. He was diagnosed with BBS just before he was born. BBS is a rare syndrome that affects about 1 in 250,000 people in North America. People with BBS have a defect in the way their cells communicate with each other. It's a complex syndrome with a wide range of symptoms and a lot of variation from person-to-person. But usually people with BBS have trouble developing strength, impaired kidney function, hampered senses and vision loss.
Due to the syndrome, Nathanael's muscles did not develop normally. It was a fight for him to learn to crawl, and then to walk, run and jump. But he did it. It was fight for him to learn to speak. But he did it. It was a fight for him to develop the strength and balance to pedal a bike, even a tandem. But he did it. He's fought back against his progressive vision loss by learning to use a cane, and mastering braille. Every day he pushes himself to eat healthy and exercise to keep growing stronger. Taking on a 36 mile bike ride is just the latest challenge he's taken on. Meet Nathanael and Tim in the video above.
Research on BBS has advanced rapidly in the last 20 years, when the first gene was linked to the syndrome. Now more than 21 have been identified and we know why these genes cause the symptoms they do. But developing therapies still requires much more research. The Clinical Registry Investigating Bardet Biedl Syndrome, or CRIBBS, is key to that research. The registry gathers clinical information from people with BBS so that researchers can better understand how the syndrome works. Without a central registry it would simply be too expensive to track down information on this rare disease. The registry, launched four years ago, is already playing a key role in advancing research and attracting investment in possible therapies.
The Bardet Biedl Syndrome Foundation is a registered 501(c)3 non-profit dedicated to improving the lives of families affected by Bardet Biedl Syndrome through information, support and by advancing research and therapy. All donations are tax deductible and support research and programs to support families affected by BBS.
About the Rocky Ride
We depart from Exton Park and ride the Chester Valley Trail for about 10 miles to Valley Forge Rd. After a short ride through a suburban neighborhood, we ride up into Valley Forge National Park, the only hill on the ride. From there we cross the Schuykill River on a separated bike bridge and join the Schuylkill River Trail, riding about 18 miles to the Philadelphia Art Museum. Aside from the transition between the Chester Valley Trail to Valley Forge National Park and one short stretch on the Schuykill River Trail, the entire ride is on protected bike trails.
We'll be met by supporters at the steps who will take charge of our bikes as we run up the steps to the "finish line". We'll have refreshments at the start and at the Art Museum. After the ride, a trailer for bikes and a shuttle for riders will be available to bring everyone back to Exton Park.
Contact Us for more details or any questions.