Bardet Biedl Syndrome Family Association

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

Bring Light to BBS

2nd Annual Golf Tournament for
Bardet Biedl Syndrome Research
Thursday, October 22, 2015

Hosted by Donna and Tim West
Cannongate Golf Course: 924 Shaw Rd | Sharpsburg, GA 30277

Registration: 8:30 AM | Shotgun Start: 10:00 AM

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

Please choose an option to register for the golf tournament fundraiser:

We invite you to join us for the second annual golf tournament to benefit Bardet-Biedl Syndrome reach. As most of you know, our son Tyler was diagnosed with this very rare syndrome when he was three years old. BBS affects many systems of the body and each individual is affected differently. Tyler is now nine years old and due to the breakdown in the communication of his cells, he his losing his eyesight and he continues to struggle daily with appetite and weight control. The BBS Family Association has worked hand in hand with Marshfield Clinic to create an organization where we can finally raise money to support research specifically for individuals with BBS.

In 2014, Marshfield Clinic developed a National Registry that will accelerate research leading to better treatment of BBS. Our goal is to continue to help fund this Registry. Developing and maintaining a National Registry is critical as it greatly increases the chances of people with rare syndromes to be included in clinical trials being developed by the world’s leading researchers. We are so excited about this and are happy to report that we have over 100 people affected by BBS entered into the registry to date. Marshfield Clinic has submitted for a grant to do an in depth weight study on BBS, which they are very close to receiving. This would not be possible without the Registry and without your support!

We had so much fun last year and are happy to report that this year we will have the entire course as opposed to just the first 18 holes! Also, we will have chicken biscuits for breakfast, a barbeque lunch, and exciting raffle items again this year.  

For additional information or questions, please contact:
Tim West: 678-877-2004
Donna West: 404-775-8982
Sherry Butler: 404-606-9325

*A portion of your registration is tax-deductible.

Donate

Not able to make it to the tournament or be a tournament sponsor? Donate to the Bardet Biedl Syndrome Foundation.