1st Annual Rocky Ride for BBS Research
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. This September, Nathanael and Tim Ogden will be riding 30 miles from Malvern, PA, near their home, to the Philadelphia Museum of Art and running up those iconic steps to declare to the world that they will fight and they won't quit.
The way to fight back against a rare disease is research. Nathanael and Tim are raising money to support CRIBBS, a vital tool for researchers working to better understand and develop therapies for the syndrome. Will you join them in the fight by sponsoring the Rocky Ride? Read more ...
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Nathanael is 11 years old, and will be entering 6th 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 30 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.
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