The aura was typical for January. The sun had not shone on Clermont, KY for eight days straight, and it looked as if the winter would add one more notch to its gloomy streak. At the Jim Beam distillery, David Faughn and Glenda McCoy ascended the steps to Warehouse K. In that moment, the monochromatic layers of the sky shifted, and a chasm in the gloom appeared. Above David and Glenda, the heavens opened to a deep, azure hue, and the warmth of sunbeams lighted upon the couple, bathing them in a warm glow, guiding their way toward the barrels of aging bourbon inside. The moment of brightness reflected the stirring of their hearts.
The couple were flanked by members of multiple bourbon societies and groups. They'd come from Louisville, Lexington, Owensboro, Nashville, and Paducah. Awaiting them just inside the door were three barrels of Knob Creek bourbon. Their mission: select the best single-barrel bourbon that would help David and Glenda's daughter.
When Katherine Belle was born in 2011, nothing seemed out of the ordinary. But when she wasn't walking at eighteen months, David and Glenda sought help to discover what was wrong. Katherine started showing a lack of coordination, low muscle tone, mild tremors, and gross motor skills regression. After some misdiagnoses, doctors determined she had a rare form of Mitochondrial Complex 1 Deficiency based on mutations to her NUBPL gene. Simply stated, NUBPL disease is a progressive, genetic disorder that causes atrophy to the cerebellum, truncating signals from the brain to the body and back. Unfortunately, the rarity of the disease (less than fifty diagnosed) means that little is known, and research is lacking.
David and Glenda founded the NUBPL Foundation to spur funding and research. David, a bourbon fan, got together with his cousin, Brian Shemwell (President of the Paducah Bourbon Society), and the pair secured a bottle of rare, Buffalo Trace O.F.C. Vintage Series Bourbon. Buffalo Trace released fifty bottles of the bourbon (valued at $10,000) to charities, and they awarded the NUBPL Foundation one. David and Brian organized a charitable event at Haymarket Whiskey Bar in Louisville where lucky ticket holders could taste the bourbon along with other rare bourbons and get a bottle of Knob Creek Single Barrel selected by the bourbon groups. At the end of the night, over $32,000 had been raised, giving David and Glenda a firm start to finding a cure.
A few months earlier, back in Warehouse K, the gathered group of bourbon fans sipped samples from each barrel, each in agreement that one stood above the rest. With the selection complete, members of the bourbon groups signed the barrel head along with David and Glenda. Their eyes grew damp. "You don't know what this means to us," said David. "We hope this helps give her and others a chance. To my wife and I, this means the life of our daughter."
And the love of bourbon and the desire to give has already produced fruit. A link between NUBPL and Parkinson's has been discovered, and David and Glenda are working with researchers at UC, Irvine to begin the journey of understanding and curing the disease.
"These are the kinds of projects we always had in mind," said Brian Shemwell. "The Bourbon Society is about learning and enjoying bourbon, but from the beginning, we saw it as a way to give back." Over the past year, the group has raised funds and gathered food for Paducah Cooperative Ministries, HEART USA, and others. The Paducah Bourbon Society is currently working on getting their 501(c)(3) non-profit status with major plans to extend their charitable works. "We have a shared enthusiasm for Kentucky's native spirit, and it's a good way to bring people together for a common cause."
David and Glenda personally know the hope that springs from bourbon enthusiasts. It is a hope that is extended to their daughter Katherine Belle. Through this spirit of giving, the clouds are beginning to part, and light shines upon them once again.
For more information on the NUBPL Foundation, visit nubpl.org.
