Stories

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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…

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.

On Transitioning Into Adult Care

Building new relationships can be as challenging as it is rewarding. Many families face uncertainty when connecting with a new neurologist that will help their…

A RARE conversation: RARECast podcast interview with Amy Brin

Just before the holidays, our own Amy Brin was a guest on the RARECast podcast, a podcast by Global Genes that’s hosted by Daniel Levine. RARECast…

CNF Transition of Care Video Production

In late July, CNF worked with a director and film crew to shoot videos that would illuminate the complexity of transition of care for young…

Carrie Fisher’s Last Advice, “As Your Bipolar Sister”

Star Wars fans around the world were saddened to hear about the passing of Carrie Fisher. Along with being a great actress, she was also a…

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