2020

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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, Child Neurology Foundation, and the…

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,…

Ethan

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

Disorder Directory

A list of diseases and conditions sourced through CNF’s partnership with The National Institute of Neurological Disorders and Stroke (NINDS), US National Institutes of Health.

COVID-19 Resources

Navigating the New Normal – Resources, educational content, stories and grants for coping with COVID-19

Essential Back-to-School Guide for Families with Complex Healthcare Needs

All parents have questions and concerns about sending their children back to school during the current pandemic, but the child neurology community faces additional challenges.

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 others in the works.

Elliot

Elliot is one of the children who received a $1,000 Rise Family Grant from CNF. Here is a message from his family. “It’s no secret…

Luke

“Of course, the isolation for COVID-19 was hard on everyone. For us, life changed drastically.”

Quinn

“My daughter was chosen as one of the grant recipients in the first round. I just wanted to say thank you so much.”

The Cute Syndrome Foundation – Food Clubs

In June, the Cute Syndrome Foundation received a Rising Tides Grant from the Child Neurology Foundation to lift a social and emotional support program off…

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 Health System Stakeholders to Help…

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 becomes available.  The public has been…

The Cute Syndrome Foundation – Book Club

Here are some highlights of the book club supported by the RISING Tides grant, with details and photographs provided by the Cute Syndrome Foundation.

COVID-19 Stories

A selection of stories from families in our community during the pandemic.

Shortening the Diagnostic Odyssey

It is critical to get to a diagnosis sooner so that parents, caregivers, and physicians can begin the process of finding possible treatments and make…

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 the pediatric neurology community and…

Getting to Know the CNF Team – Greta Pittard

We’d like to welcome Greta Pittard to the CNF Team. To help you get to know her, Greta answered a few questions to share with…

Getting to Know the CNF Team – Clare Hennig

In 2020, we’re making some additions to the CNF team to help us better serve the child neurology community. Please join us in welcoming Clare…

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