WHAT IS CDKL5?
CDKL5 deficiency disorder is a rare developmental epileptic encephalopathy caused by mutations in the CDKL5 gene, and this can manifest in a broad range of clinical symptoms and severity. The hallmarks are early-onset, intractable epilepsy and neurodevelopmental delay impacting cognitive, motor, speech, and visual function. Although rare, the occurrence is believed to be ~1:40,000 -60,000 live births, making it one of the most common forms of genetic epilepsy.
WHO IS INTERNATIONAL RESEARCH FOR CDKL5?
The IFCR is committed to funding scientific and clinical research that will bring about treatments and, ultimately, a cure for CDKL5. We strive to raise awareness of this rare disorder within the medical and lay communities.
The IFCR is working hard to find treatments and a cure for CDKL5. We continue to fund a variety of scientific research projects and our Centers of Excellence provide vital clinical research that is essential for the success of CDD trials, including genetic therapies.
TANNERS JOURNEY….
We were inspired to select cdkl5 research as our organization to support on this barrel pick because of the Froy family and their personal journey with the disorder. The Froy’s reside in Woodstock and are a beautiful family of 5. Tanner, who lives with the rare genetic disorder, is the middle child of the Froy family, and just celebrated his 10th birthday this month! Read his blog below and learn more about the advances being made to find a cure for Tanner and other children living with CDKL5
About – TANNER’S JOURNEY (tannersjourney.com)
About Bardstown and this Barrel pick:
This release is the first of two Bardstown Private Cask Strength Bourbon barrels, which we picked back in 2021 and have had aging to perfection in Rick House A 6th Floor at Bardstown. This exclusive barrel is a high rye bourbon 60/40 mash bill and is in a league of its own and will never be seen again. Rootstock’s tasting team was one of the last groups given the privilege of picking a “future barrel” before the program was discontinued.
Learn about https://bardstownbourbon.com/
