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 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

Player
100.00
Sponsorship Team
from 750.00
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 10 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 National Registry for BBS, developed by the Marshfield Clinic in 2013. This registry makes it possible for people with BBS to be included in clinical trails. We are so excited to report that we now have almost 270 patients in the registry from around the world. An article has already been published solely due to the data obtained from the registry that is in regards to kidney transplants in patients with BBS. This could be life-saving information that would not have been possible to publish without the data from the Registry. All in 3 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.