SPEAK UP, SPEAK OUT

Believe Limited, in partnership with Amgen and the Cystinosis Research Network, is excited to bring back the fifth annual Speak Up, Speak Out: Cystinosis and Me!—a one-of-a-kind spoken-word self-advocacy workshop for young people living with cystinosis.

For our fifth year, Speak Up, Speak Out: Cystinosis and Me! returns reimagined and more dynamic than ever, inviting young people with Cystinosis to step into a new chapter of creativity, connection, and self-advocacy. 

WHAT TO EXPECT

This transformative three-day experience, Speak Up, Speak Out: Cystinosis and Me! will take place July 17-19, 2026, in Chicago, Illinois. This program is designed to empower participants (ages 13-22) to:

• Use their own words to share their story

• Explore the healing power of creative expression

• Build confidence and community by consciously removing barriers to participation through facilitation techniques and improv theater games.

• Strengthen self-advocacy skills

The SUSO workshop culminates in a live performance where participants share their stories on stage!

WHO CAN APPLY

Open to U.S. residents ages 13-22 living with cystinosis. While an interest in theater, performance, poetry, writing, creative arts, advocacy, or community-building is encouraged, no prior experience is necessary. Spaces are limited.

Participants with cystinosis may invite a sibling (ages 13-22) living in the same household to attend the Speak Up, Speak Out program alongside them. While siblings are welcome, priority participation is given to those living with cystinosis.

Participants are also encouraged to bring a chaperone or caregiver to assist with travel. A chaperone must be 18 or older and reside in the same household as the participant.

If you have any questions, feel free to reach out to Hanna at hanna@believeltd.com, or Ed at ed@believeltd.com