Blog

CDKL5 Spotlight on Isabella

Meet Isabella our CDKL5 September Spotlight! Mom, Alexia, shares her story! This is Isabella, our resilient happy three-year-old. We didn’t receive our CDKL5 diagnosis until she was around one. Up until then we were trying to find answers for the seizures she was having. We…

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Spotlight: Alysson Renato Muotri, PhD

In honor of our 10th anniversary, we thought it would be fun to do a spotlight on Alysson R. Muotri, PhD, who was one of the original researchers who worked on the iPS cell lines for CDKL5. Dr. Muotri is Professor of Pediatrics and Cellular…

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CDKL5 Spotlight on Noah

It’s time for another CDKL5 Spotlight! Meet Noah from Tennessee! Mom, Jennifer, shares about her precious boy! Noah was a huge surprise to our family. We thought we were done after my daughter, Addison, was born due to severe complications I had after her birth.…

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How PFDD Helps Families Affected by CDKL5 Deficiency

PFDD Meeting for CDKL5 Community On November 1, 2019, IFCR and the LouLou foundation will co-sponsor a Patient-Focused Drug Development (PFDD) meeting for CDKL5 Deficiency Disorder. This meeting is a very rare opportunity to convene patients, regulators, researchers, developers, and health-care professionals. PFDD meetings are a…

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CDKL5 Spotlight on Aubree

I have procrastinated in writing Aubree’s story for this Spotlight. I enjoy writing and am never hesitant to be involved in anything related to CDKL5 Awareness, but for some reason I kept putting off writing this. As I finally sat down today in the few…

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CDKL5 Spotlight on Miriam

Meet 4-year-old Miriam from Kentucky! Mom, Belinda, shares about her sweet daughter. Miriam Jolene had her first seizure at 2 days old. By 2 weeks old she was diagnosed with epilepsy and by 5 months old she was diagnosed with CDKL5 Deficiency Disorder. Although Miriam…

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CDKL5 Spotlight on Penny

It’s time for another CDKL5 Spotlight! Meet Penny! Her mom, Brittany, shares about her special girl! “Penny was born on December 2, 2015. It was a planned pregnancy with no complications. Delivery went well, and needless to say, my husband and I were so excited…

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What does CDKL5 Disorder mean for brothers and sisters?

By Karen Utley, IFCR President How do siblings cope? A few months back, I was talking to another mom of a child affected by CDKL5 Deficiency Disorder, and she was expressing her concern about her other children and how all of the challenges would impact…

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How to Cope as a Parent of a Child with Special Needs

You Are Not Alone It takes a while to learn how to cope as a parent of a child with special needs. We have been there and are happy to share what we’ve learned along our journeys. Here are 10 tips we find help us…

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CDKL5 Spotlight on Braylon

It’s time for another CDKL5 Spotlight! Meet Braylon! His mom, Deshaun, tells us about her sweet boy. Braylon was born January 15th, 2010. He was a healthy boy who amazed nurses/doctors with his head control and gorgeous blue eyes. There were no signs of anything…

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