Bardet Biedl Syndrome Foundation

Connecting families and sharing information on research, treatment, and therapies for Bardet Biedl Syndrome.

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Peirce Pride Supporting The Rocky Ride

Raising Funds to Support a Peirce Student’s Fight Against a Rare Disease
October 13, 2018

Nathanael Ogden is a seventh grader at Peirce Middle School, where I’m now the principal. He might be the most well-known student in the school. That’s because there’s something instantly recognizable about him: his white cane. Nathanael is legally blind.

Nathanael has Bardet Biedl Syndrome (BBS), a rare genetic disease that among other things, limits his muscle development and his senses, especially his vision. Since this is my first year at Peirce, I’m just getting to know Nathanael, but there’s something else that stands out about him—his great attitude and his willingness to take on a challenge.

For the second year in a row, Nathanael and his dad are biking 36 miles from their home to the Philadelphia Museum of Art, where they’ll run up the iconic steps, just like Rocky, to raise funds to support research on Bardet Biedl Syndrome (Learn more about Nathanael and BBS...). They call it The Rocky Ride.

The very first time I met parents and students at Peirce, before the school year started, Nathanael marched up to me and challenged me to join him on the Rocky Ride. If you know me, you know there’s no way I could say no to challenge like that.

So I’m joining in. And I’m hoping to support Nathanael’s Rocky Ride by encouraging others to donate to the Bardet Biedl Syndrome Foundation.

 Nathanael being interviewed in front of Peirce by CBS Philly last fall

Nathanael being interviewed in front of Peirce by CBS Philly last fall

 Nathanael at the top of the steps at last year’s Rocky Ride

Nathanael at the top of the steps at last year’s Rocky Ride

Would you consider sponsoring me and supporting Nathanael on his Rocky Ride? 100% of your donation will go to the BBS Foundation.

Learn more about the Rocky Ride...


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About Nathanael and BBS

Nathanael is 12 years old, and will be entering 7th 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. 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 departs from Exton Park on the Chester Valley Trail, continuing 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 Schuykill River on a separated bike bridge and join the Schuylkill River Trail, riding about 18 miles to the Philadelphia Art Museum. And then we run up the steps!

The Rocky Ride was created by Tim and Nathanael Ogden to raise funds for Bardet Biedl Syndrome research. The first ride, in September 2017, raised more than $25,000.

For more details or any questions, contact us.