Bring Light to BBS
5th Annual Golf Tournament for
Bardet Biedl Syndrome Research
October 18, 2018
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 5th 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 400th patient, a pharmaceutical company is launching a Phase III trial for a drug to treat hunger and obesity symptoms in BBS, and the BBS Foundation is funding new research into possible approaches to limit vision loss in BBS.
Thank you all for your terrific support!!!
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 12 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 400 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, will begin this fall.
To top it all off the BBS Foundation is now funding a brand new research initiative to test a form of gene therapy for BBS. Any positive results are still years off, but it is amazing progress in the short amount of time since we started Bring Light to BBS. All of this in four years...we can’t wait to see what the future holds!
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.