There are moments in life that take your breath away. For me it was my daughters first seizure when she was 8 weeks old. And there are moments that change the course of your life in a single word, CDKL5, and a single sentence, "It's very, very rare!" When I heard these words, it was October 2008 and my precious daughter, Kiera, was almost three years old. I was stunned and devastated. It was an uncomfortable place to be, because as a physician I was used to finding solutions and looking to science and research for clues and direction. There was virtually no research being done on CDKL5, no understanding of what CDKL5 was, and no unifying organization to encourage and fundraise for research, for raising awareness or for helping families.
After meeting other CDKL5 parents online, I knew that we were capable of rallying together and making a difference for our children. Within a few short months, a small group of us came together to move mountains, and it was my honor to be founder and president of IFCR for 8 years. We accomplished so much, and research has hit a smooth stride with multiple research organizations now taking up the cause of CDKL5 Deficiency Disorder. But the one area that is very underrepresented in current research is the area of clinical ther