News & Family Stories

Newsletter Archive

ELJ-101: Your Guide to the Gene Therapy Webinar Highlights!

Stella Strong: One Family’s Journey

Girls smiling wearing a yellow sun dress, denim jacket, and sun hat, with grass, bushes, and a building in the background.

The Williams Family: Ezra’s Bingo Bash

A couple wearing yellow shirts each holding one of their children in front of a sign that says Ezra's Bingo Bash in green and purple on a white background.

From Diagnosis to Determination

Mallory in between her parents at a fundraiser with a banner with logos in the background.

Parker’s Journey: A Story of Resilience and Hope

Announcing Robyn Raphael as Executive Director of the International Foundation for CDKL5 Research 

Grant Award to Dr. Benke’s CDKL5 Lab!

The Voice Project

U01 Study Update with Dr. Tim Benke

Empowering the CDKL5 Community Through Advocacy

Longboard Pharmaceuticals Announces Phase 3 Clinical Trial Site Activations

The IFCR Attends the NORD Breakthrough Summit

Raise Awareness Volunteer Fundraise Participate in Research