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]

Dec. 1-7 is Infantile Spasms Awareness Week

Infantile Spasms (IS) are a medical emergency. Infantile spasms are a rare, but very serious type of seizure. Infantile spasms are…

Public Health Message: Surge of Respiratory Illnesses

Our friends at the Maternal and Child Health Bureau have shared with us that with winter still more than a…

Amy Brin on the Value of Nonprofit Collaboration

CNF Executive Director and CEO Amy Brin was recently featured on the Successful Nonprofits podcast to talk about CNF’s unique…

Welcome Three New Members to the Board!

Welcome! This month CNF welcomed three new members to the board: Madeline Chadehumbe, MD Peter Kang, MD Monique Terrell Madeline…

The Value of Family Support When Living with Dravet Syndrome

Charlotte Martenz, 17 years old, experienced her first seizure at 4 months old and was diagnosed with Dravet syndrome in…

Taking Our Mission to D.C.: Why and How We Advocate For #NeuroHeros

Did you know 1 in 5 children in the US live with a neurologic condition, many of which require life-long…

Congratulations to our 2022 Scholarship and Grant Recipients!

Since 2001, the Child Neurology Foundation has awarded over $4.1 million dollars in research funding and scholarships to young investigators…

Staying ahead of a progressing disease: How Jodie and Luke Bolt are Neuro Heroes

In honor of Child Neurology Awareness Day on Oct. 29, we are sharing stories from the Neuro Heroes in our community.…

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.

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…

Ethan

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

Quincy

“Through lots of therapies and hard work, he is a poster child for neuroplasticity.”

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