Help Us Continue Connecting USHearts

Around the world living with Usher syndrome

"The USHthis camp was a unique experience for me because I got to meet kids just like me with the same problems and I realized I was not alone. I really want other kids to be able to experience the same thing."

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Galen's Voice

Galen and his mom are joining forces this September to raise money for Ava’s Voice, an official partner of the Usher Syndrome Coalition. Ava’s Voice focuses on empowering youth with Usher Syndrome as they take on the world! Galen recently attended the USHthis Camp this past June 2023 held in New Jersey, USA.

Not only was this Galen’s first opportunity to experience a sleep-away camp given his hearing, vision, and balance issues, but it was life changing for him to connect with other USH kids who truly understand how he experiences the world and to gain confidence to believe that he can do the same things that other kids can do! He came away from that experience wanting to help make the camp a reality for other kids with Usher Syndrome.

Galen’s mom will be running the Equinox Marathon in September, during the fall equinox when light and dark are balanced before tipping into Alaska’s dark winter, a fitting metaphor for the blindness and other visual challenges that USH kids face every single day. And this year, Galen will walk it – a feat for anyone but especially for a 13 year old with his own vision, hearing, and balance issues.

Please consider supporting Caroline and Galen by supporting Ava’s Voice and the amazing work they do connecting USHhearts around the world and helping kids to “dream it. believe it. crUSH it.”

Their Perspective

“Just seeing them (older mentors) living and thriving in this environment was really comforting They’re making it,  I’m gonna make it, everything is going to be ok” ~Gianna

“I felt like I was understood by everyone” “I’ve only known everyone for two or three days, but I feel like I’ve know them my whole life, I don’t know how to explain that” ~Asiya

“It’s been so positive, I know I can speak for everyone when I say we are all so bonded” ~Jordyn

“I’m glad that I can be around people who go through the same I do, it makes me feel better” ~ Americo

“This was one of the best weeks of my life” ~ Jonathan (JJ)