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THE WHY

In February 2019, Geoff Rhyne learned from the Greenwood Genetic Center that his 15 month old daughter, Ella Marie, had a rare genetic disorder called Kleefstra Syndrome.  For the previous 15 months, Ella had struggled to meet milestones and experienced a myriad of symptoms: pulmonary valve stenosis, hypotonia, RSV, and delays in motor functioning.

 

Like 95% of rare diseases, Kleefstra Syndrome has no FDA approved treatment.  There is no cure.  However, Geoff has become determined to drive research and drug development to help not only his daughter, but also, as many other patients as possible.  In September of 2020, Geoff and his partners launched IDefine, and quickly raised over $100k to fund the 1st ever medical center in the US focused on Kleefstra Syndrome, the Kleefstra Clinic at Boston Children’s Hospital.  Recently, Geoff hosted an International Conference on Kleefstra Syndrome that saw over 500 clinicians, researchers, and patients attend from 37 countries around the world!  Time is of the essence in this battle, and we must accelerate the research and drive progress. 

 

To acquire the funding necessary, Geoff decided to leverage his background in the food and beverage community to create a unique, must attend event.  The first call was to Jason Callaway of Bacon Bros Public House about doing a Greenville-based BBQ and music event.  Soon thereafter, Jason connected Geoff with Brenda Luginbill of CB Events, and local entrepreneur, Patrick McInerney and the team started formulating the idea of a hometown hangout that would bring the community together in a reunion style format to benefit the nonprofit Geoff started, IDefine, and the Greenwood Genetic Center.

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