Bardet Biedl Syndrome Foundation

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

Bring Light to BBS

6th Annual Golf Tournament for
Bardet Biedl Syndrome Research
October 17, 2019

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 excited to open the 6th annual Bring Light to BBS Golf Tournament supporting BBS research for registration. Over the last 5 years, we've raised more than $100,000 for BBS--and we're seeing results. This year the clinical registry that is so important for researchers has enrolled it's 500th patient, a pharmaceutical company is conducting a Phase III trial for a drug to treat hunger and obesity symptoms in BBS, and research on gene therapy funded by the tournament and the BBS Foundation is making marked progress.

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.

 
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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 13 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 four 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. A Phase III trial, the last stage before a treatment is approve by the FDA, began last fall.

Thanks to funds raised by the tournament over the last few years, the BBS Foundation is funding research to test a gene therapy to limit vision loss in BBS. While the current work is in mouse models, there has been amazing progress already.


We had so much fun over the years 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, prizes and some very special guests!

For additional information or questions, please contact:
Tim West: 678-877-1009
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.