Mia is 3 years old and has a rare form of epilepsy, SCN8A, that causes developmental delays and other problems as well.
He has a smile that lights up a room, he loves people, and he’s also a typical rowdy boy.
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…
We feel so blessed to have her in our lives. The joy that pours out of her is contagious.
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…
“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,…
“With schools being closed, any interaction Ethan can get is vital.”
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.
Navigating the New Normal – Resources, educational content, stories and grants for coping with COVID-19
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.
“Through lots of therapies and hard work, he is a poster child for neuroplasticity.”
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 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…
“Of course, the isolation for COVID-19 was hard on everyone. For us, life changed drastically.”
“My daughter was chosen as one of the grant recipients in the first round. I just wanted to say thank you so much.”
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…
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…
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…
Here are some highlights of the book club supported by the RISING Tides grant, with details and photographs provided by the Cute Syndrome Foundation.
A selection of stories from families in our community during the pandemic.