In the company of
heroes, dreamers, advocates, guardians, researchers, allies, families, fighters, groundbreakers, rare.
Hear from others like you.
“After answering questions like, ‘Tell me something that you’re proud of. What are you enjoying about your child? What makes them laugh?’ parents were saying, ‘I am now seeing my child through a different lens. I am seeing how my child is developing. Not only in the realms of speech and language, but of character and personality.’”
“To my other peers with a rare disease – you’re definitely not alone. There’s always someone that understands and is going through what you’re going through. There’s always someone you can talk to. Don’t keep it bottled up.”