3rd Annual Rocky Ride for BBS Research
September 29th, 2019
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 and a few friends 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.
With the support of many wonderful people from our community and beyond, Nathanael and Tim raised more than $25,000 to support CRIBBS, a vital tool for researchers working to better understand and develop therapies for the syndrome. In 2018, 20 friends joined them on the ride—together they raised nearly $35,000 to fund gene therapy research for BBS. This year, they are back for more.
On Saturday, September 28th Nathanael and Tim will be riding again 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? Volunteer to support the ride on the 28th?
SPECIAL THANKS TO OUR SPONSORS:
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
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.
For more details or any questions, contact us.
Ride With Us
This year, we're inviting others to 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 Park. 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.