Bardet Biedl Syndrome Family Association

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

Bring Light to BBS

4th Annual Golf Tournament for
Bardet Biedl Syndrome Research
October 5, 2017

Hosted by Donna and Tim West on behalf of their son, Tyler West
Cannongate Golf Course: 924 Shaw Rd | Sharpsburg, GA 30277

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

 

We're Full! All player/team slots have been taken. You can still sponsor a hole, or make a donation to the BBS Foundation.

Thank you all for your terrific support!!!

Donate

Not able to make it to the tournament or be a tournament sponsor?
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 11 years old and continues to do really well. While his vision is deteriorating, he is proficient in braille and is learning how to use a white cane for travel. 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 two 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 300 patients in the registry from 42 states and 15 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 this year, again because the registry makes it possible to find participants and measure progress. All of this in 4 years...we can’t wait to see what the future holds!

We had so much fun last year and are looking forward to an even more exciting event this year. We will be providing breakfast and lunch again this year and there will also be raffles and prizes!
 

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


*Proceeds go to the Bardet Biedl Syndrome Foundation, a 501(c)(3) non-profit.
*A portion of your registration is tax-deductible.