COVID-19 Stories
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COVID-19 Stories

Huge thanks to CNF’s COVID-19 Resource Partners A Little Help Foundation, Biogen, Bluebird Bio, Eisai, Illumina, Mallinckrodt Pharmaceuticals, Neurelis, Nick and Gardiner Lapham, Ovid Therapeutics, Retrophin, UCB, Upsher-Smith Laboratories and the Winokur Family Foundation for enabling us to offer more than $250,000 in funding to the child neurology community.

If you’d like to be a rising tide to help lift up the child neurology community, please reach out to the Child Neurology Foundation at info@childneurologyfoundation.org.

Audrey

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 their families in the St. Louis area and beyond.

Reuben

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 after Valentine’s Day in 2019 …

May

May

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 up which was out of character.

Lucas

“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 received his new wheels last week, and we are so…

Luke

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

Mia

Mia

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

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 affords her a level of independence she hasn’t experienced in years.

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 their ability to walk, talk, see—sometimes even eat or breathe, until we find treatment.”

Ethan

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

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