The International Foundation for CDKL5 Research (IFCR) has grown from the passion of parent advocates seeking a better tomorrow for their children. Dr. Katheryn Elibri Frame, a co-founder of the organization, found her passion for this cause with the diagnosis of her sweet daughter, Kiera, in October of 2008. She, along with six other mothers, began a journey that they hoped would make a difference for their children. IFCR was formed with the goals of funding research, providing family support, and raising awareness.
We want to thank Katheryn for representing the IFCR and CDKL5 families. Her dedication to the organization has helped lay the groundwork for a better understanding of CDKL5. During her time as president, the foundation has funded the creation of biological models, established multiple Centers of Excellence, and collaborated with organizations worldwide to build a team of researchers diligently working to learn more about CDKL5. Because of her efforts, we are closer to treatments and a cure that will benefit those living with this disorder.
Fellow founding member and current board Treasurer, Karen Utley feels honored and prepared to succeed Katheryn in the position of president. Karen has both a familiarity with the organization balanced with new ideas and changes for her presidency. Karen’s daughter Samantha inspired her to pursue a degree in biological sciences which will aid her significantly when dealing with scientific and research requirements. Karen, along with the rest of the board of directors, is looking forward to continuing the work of building a robust science and family support program with our scientific advisor, Dr. David Frame.
To quote Katheryn, “This road has not been easy, and there may be difficult days ahead, but we have come a long way in a short time. I have confidence and plenty of hope, that what lies ahead is better and brighter than where we started.” We wish Katheryn all the best in her future endeavors and welcome Karen to her new role!