News & Stories

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News & Stories

Click on the news tab to read the latest updates about the Child Neurology Foundation and what’s happening in our community. Click on stories to learn more about the lives of children, families, partners, advocates and others in our community. If you would like to submit a story, please email [email protected].

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…

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…

Family Support Program Grows with New Hires

The Child Neurology Foundation is excited to announce the addition of two incredible women to our Family Support Program staff:…

CNF-CNS Statement on Türkiye and Syria Earthquake

As the leading organizations representing the child neurology community, we stand in solidarity with our child neurology colleagues, their patients…

Harnett Grant Recipient Shares Their Family’s Infantile Spasms Story

The Child Neurology Foundation helps families throughout the course of their journey. Thanks to the generous support of the Harnett…

What CNF Families Need To Know About Medicaid Unwinding

What CNF Families Need To Know About Medicaid Unwinding Although the COVID-19 public health emergency is ongoing, some protections are…

#NeuroHero Story: Rylae-Ann’s Diagnostic Journey With a Rare Disease

  Richard Poullin and Judy Wei live in Thailand with their 4-year-old daughter Rylae-Ann. Although Judy says her pregnancy and…

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…

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…

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…

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…

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…

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…

Audrey

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

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…

Reuben

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

May

May

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

Lucas

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

Luke

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

Mia

Mia

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

Lucas

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

Gracie

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

Evelyn

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

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