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!
Please donate to help Lucas and I support this great cause. Thanks!
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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.
Questions? Contact Us
About the Rocky Ride
The Rocky Ride is an annual fundraiser begun in 2017 to raise funds for Bardet Biedl Syndrome research. The ride departs from Exton Park on the Chester Valley Trail for about 10 miles to Valley 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 Schuylkill River on a separated bike bridge and join the Schuylkill River Trail, riding about 18 miles to the Philadelphia Art Museum. Of course, once we’re there we run up the steps.
The Rocky Ride is inspired by the Rocky films, particularly the first one and it’s famous training montage. The message of the first film is in many ways more inspiring than the later films. In the first film Rocky goes into the fight knowing he is overmatched. He doesn’t expect to win. But he refuses to do anything less than give his all to train for the fight. That’s often what it’s like confronting a rare disease. Our opponent is formidable and we don’t know whether we will win. But we are going to give our all to the fight. We’re not going to back down. More than just raising money, the Rocky Ride is our way of showing that to the world.
For more details or any questions, contact us.