Theme: Extended Family and Friends

Engaging and also Protecting the (grand)...

Sharing the news of a genetic diagnosis ...

Support in the home: Having the support ...

Being the Aunt: It wasn’t easy but I w...

Being the Aunt: Staying with his body.

Navigating Friends

Navigating the grandparents: It’s an a...

Mom and Grandmother: My mom had no opini...

A mom – “My mom initiated co...

Mom to Grandma “I remember us talking ...

“I learned you can’t take care of th...

Going to the affected families conferenc...