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 info@childneurologyfoundation.org.

Congratulations to the 2020 PERF and NDD grant recipients!

Congratulations to the 2020 PERF grants and NDD scholarship recipients! Every year, the Child Neurology Foundation — along with the…

Creating a Culture of Collaboration: Paul Cooper receives Facilitation Impact Award with CNF

Update Oct. 26, 2020: The Child Neurology Foundation is pleased to announce that our facilitator Paul Cooper, CPF, alongside CEO…

In memoriam of Dr. Kenneth Swaiman, founder of CNF

We regret to announce the death of Kenneth Swaiman, MD, the founder and first president of the Child Neurology Society,…

Guidelines for Ensuring Access to Care and Treatment for Rare Disease Patients

Global Genes and Child Neurology Foundation Outline “Guiding Principles of Rare Disease Care and Patient Access” in Joint Report, Urging…

National Academies of Medicine releases draft of proposed guidelines for COVID-19 vaccine, seeking public feedback

On Tuesday, September 1, the National Academies of Medicine (NAM) released a draft of their proposed guidelines for the distribution of a potential COVID-19 vaccine once it…

Child Neurology Foundation CEO Amy Brin To Lead Epilepsy Leadership Council’s New Steering Committee

The Child Neurology Foundation is pleased to announce that CEO and Executive Director Amy Brin is furthering her commitment to…

CNF’s Internal Response to COVID-19

In addition to offering support and guidance to our community in the time of COVID-19, we also want to share…

CNF & CNS’ Joint Official Response to COVID-19

In recent months, SARS2-CoV-2, a new form of a class of viruses referred to as Coronavirus has caused an illness…

Welcome to the Board – Timothy Engel

Late in 2020, CNF was lucky enough to have two new members join our Board of Directors. One of those…

Welcome to the Board – Bruce Cohen

In late 2020, two new members joined the CNF Board of Directors. One of those members is Dr. Bruce Cohen,…

Reuben

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

Getting to know the CNF team – Nicky Young

We’d like to welcome Nicky Young to the CNF Team. To help you get to know her, Nicky answered a…

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.”

Wishes For Elliott – Webinars

Since the CNF Rising Tides grant was funded, Wishes For Elliott has produced seven webinars for the community with many…

Elliot

Elliot is one of the children who received a $1,000 Rise Family Grant from CNF. Here is a message from…

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