Rocky Ride VI: Accelerating BBS Research
October 28th, 2023
Rocky is the Philadelphia regions' most beloved fictional resident. Forty years after the original movie, Rocky still captures imaginations because of his refusal to quit and his willingness to work hard to reach his goals. He's a hero worth emulating even if your rival isn't a boxer, but a rare disease.
Rocky is an inspiration to take on the fight against Bardet Biedl Syndrome (BBS). One of the most famous scenes in the original movie is the training montage, where Rocky runs up the steps of the Philadelphia Museum of Art. In 2017, Nathanael and Tim Ogden rode 36 miles from Exton, PA, near their home, to the Philadelphia Museum of Art and ran up those iconic steps to declare to the world that they would fight and they wouldn't quit.
Over the years, the Rocky Ride has raised more than $100,000 to support BBS research. Now back for Rocky Ride VI, the goal is to push past $150,000 of funds to help fight back against this ultra-rare disease.
On Saturday, October 28th Nathanael and Tim will be riding again, joined by other BBS families, friends, neighbors and family, because the fight against BBS isn't over. Will you join them in the fight by sponsoring the Rocky Ride? Will you ride with them? Will you volunteer to support the ride on the 28th?
Special Thanks To Our Partners and Sponsors
About Nathanael and BBS
Nathanael is 17 years old, and a senior in high school. 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. A 36 mile bike ride is just one of the challenges he’s overcome. He’s made the National Honor Society, competes on his school’s Academic Team, and has passed 6 different AP exams.
Research on BBS has advanced rapidly in the last 20 years, when the first gene was linked to the syndrome. Now more than 28 have been identified and we know why these genes cause the symptoms they do. But developing therapies that benefit everyone affected by BBS still requires more research.
Funds from the first Rocky Ride created the Clinical Registry Investigating Bardet Biedl Syndrome, or CRIBBS, a key tool for BBS research. The registry gathers clinical information from people with BBS so that researchers can better understand how the syndrome works. Now more than 1000 families have joined the registry. Funds raised in the Rocky Ride play a key role in supporting and growing CRIBBS but also in directly funding research that has led to major advances in potential gene therapy for BBS. Two different groups are planning human clinical trials in 2024. The future is brighter than ever, but we’ve got to keep up the fight.
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 benefit families affected by BBS.
About the Rocky Ride
We depart from Exton and ride the Chester Valley Trail and Schuylkill River Trail to the Museum. Aside from a brief detour due to construction on the Schuylkill 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.
Contact Us for more details or any questions.
Ride With Us
We love having people join us on the Rocky Ride. A $100 donation to join the ride includes a Rocky Ride t-shirt, refreshments along the ride, and transport back to Exton. Even better, we'll set up a sponsorship page for each rider, so you can encourage others to sponsor you and support the fight against Bardet Biedl Syndrome.
Join us by clicking on the right! There are a limited number of tandems available so if you'd like to reserve one, just let us know.
For more details or any questions, contact us.