Blog

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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IFCR Research Goals for 2019

Severity Scales and Outcome Measures Our CDKL5 Centers of Excellence continue to lead the way in CDKL5 care and treatment. One obstacle to developing treatments is a lack of clearly defined measures that would allow comparison of CDKL5 symptoms and severity. For instance, cancer tumors…

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Laughing is a Specialty

Guest Blogger – Kim Nothdurft Want to share your CDKL5 family stories? Talk to us about writing a guest post! Last week I sat with our 16 year old daughter, Lily, at one of her many specialists appointments. This time it was her Gastroenterologist, ie…

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