“When we have community, hope prevails.”

What drew you to the Child Neurology Foundation and its mission? How do you see yourself contributing to the foundation’s ability to provide support for…

Desiree Magee: Traveling with a medically complex kid

Hi there!  I would like to introduce myself, my name is Desiree, I am a wife, mother of two girls, Adelaide 15 and Daphne 8,…

Brad Thompson on ‘The Personal Side of Things’

“One thing we know – when we spend our days surviving, it’s hard if not impossible to dream.” -Brad Thompson How has the Child Neurology…

From the AAN Meeting: Insights into the Future of Neurological Care

Every year, our partners at the American Academy of Neurology host a week-long conference for neurologists to gather and learn from each other at their…

Making an Impact: The Child Neurology Foundation’s Digital Access Program

The Child Neurology Foundation’s Digital Access Program provides children and families affected by neurological disorders with access to telehealth services and a community of support…

Innovation in Child Neurology: Acadia’s Head of Rare Disease Shares What It Takes to Make a Breakthrough

Kathie Bishop, Ph.D., knows exactly what it takes to lead cutting-edge therapeutics for neurologic and rare diseases from research to development to changing lives for…

One Family’s Journey with Rett Syndrome

Life for the Heimburger family doesn’t look the way they imagined. But it also doesn’t look quite as different as they once thought it would.…

Finding Your Community, Your Source of Support

We hear from a father whose child was diagnosed with a rare disorder that had little research. This is his family’s journey finding support.   


Audrey goes to weekly therapy appointments and now we are doing full remote schooling for her. It hasn’t been easy being out of routine.

June Jessee Memorial Foundation – Virtual Programming

The June Jessee Memorial Foundation (JJMF) is a nonprofit organization that provides relief and support to help children with devastating medically complex, neurological conditions and…


Reuben has been an adventure from the get-go! He was likely having seizures before birth, but within the first few days of his birth shortly…



Our daughter May suffered what seemed like a small fall at the age of 5 months, she was rushed to the hospital after she threw…


“When we found out Lucas received a grant from the Child Neurology Foundation, it was almost as if it was an answered prayer.  Lucas finally…


Luke really needed the social interaction, and since we started two weeks ago, the light is coming back into his eyes.



Mia is 3 years old and has a rare form of epilepsy, SCN8A, that causes developmental delays and other problems as well.


He has a smile that lights up a room, he loves people, and he’s also a typical rowdy boy. 


Auggie is trained to alert to oncoming seizures, a job she takes very seriously. Auggie keeps our daughter safe, and affords her a level of…


We feel so blessed to have her in our lives. The joy that pours out of her is contagious.

KIF1A.ORG: research and therapeutic development

“While COVID-19 may bring parts of our world and lives to a halt, KIF1A will not stop robbing children of their ability to walk, talk,…


“With schools being closed, any interaction Ethan can get is vital.”

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