Bardet Biedl Syndrome Foundation

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

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The Rocky Ride for BBS Research
September 29th, 2019

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As everyone knows, Theo is an amazing young man. His smile, his sense of humor, his unique view of the world makes him one of the most memorable kids you will ever meet. What you may not know is that Theo has a rare genetic condition called Bardet-Biedl Syndrome - or BBS. BBS is an incredibly rare disease that affects less than one in 100,000 people. 

Shortly after Theo was born, we met another local family, the Ogdens, whose son Nathanael also has BBS. In 2017, Nathanael and his father Tim started a fundraiser for the BBS Foundation called The Rocky Ride, riding their tandem bike 36 miles from their hometown in Exton, PA to the Art Museum and finishing by - what else - running up the famous Rocky Steps. 

Last year, Chris joined the Ogdens and about 20 others to accelerate progress by raising money to fund research into this disease. This year, Chris is riding again—and Jakob is joining too. So we’re asking our friends and family - and everyone who has met Theo and loves him - to support us on our ride

Chris and Theo at the steps after the 2018 Rocky Ride

Chris and Theo at the steps after the 2018 Rocky Ride

Theo and Nathanael at the top of the steps

Theo and Nathanael at the top of the steps

The Rocky Ride 2017

The Rocky Ride 2017


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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.