Donate to the Bardet Biedl Syndrome Foundation.

As most of you know, our son Tyler was diagnosed with Bardet-Biedl Syndrome when he was 3 years old. BBS is a rare genetic disorder that affects many parts of the body and each individual is affected differently. Some of the primary symptoms of BBS can include retinal degeneration, obesity, and reduced kidney function. Many people with BBS are categorized as legally blind by the time they are teenagers.

Tyler is now 14 years old and continues to do really well. While his vision is deteriorating, he continues to improve his braille skills and is learning how to use a white cane for travel. Tyler is attending the school for the blind in Macon, GA this year and is making lots of new friends and learning invaluable new life skills. We are so proud of all he has accomplished so far and appreciate the support we receive from family, friends, and co-workers.

100% of the funds raised from the last five tournaments were used to fund the Clinical Registry Investigating BBS (CRIBBS), developed by the Marshfield Clinic in 2013. The registry is a critical tool for researchers to better understand BBS and develop therapies. We are so excited to report that we now have more than 500 patients in the registry from 45 states and 20 countries. Several medical journal research articles have been published using data from the registry, and every few months we learn something new from this incredible resource on a rare disease. Even more exciting, the first trial of a pharmaceutical to aid BBS symptoms began last year, again because the registry makes it possible to find participants and measure progress. The trial is in its final phases and we hope to have the drug approved and available for people with BBS in the near future.

For additional information or questions, please contact:
Donna West: 404-775-8982

*Proceeds go to the Bardet Biedl Syndrome Foundation, a 501(c)(3) non-profit.