Do I need previous experience in the arts to apply?
NO! No previous experience is required, just an interest in the arts, theater, writing, advocacy, or connecting with other like-minded young people from the greater cystinosis community!

How do I apply?
In order to apply, you must register for the Cystinosis Research Network’s 2025 Family Education Weekend. On the registration form, there is a place to indicate that you would like to apply for the Speak Up, Speak Out program.

Are chaperones allowed to attend?
YES! Transportation to and from Chicago, lodging, and food for participants and ONE chaperone will be provided.  Separate community activities will be provided for chaperones but are not mandatory. 

I’m new to performing and spoken-word; will I have to perform in front of people?
Yes. At the end of the weekend workshop, there will be a spoken-word performance for family and friends.

Public speaking makes me nervous; do I have to?
We understand that speaking in front of people can be difficult and that’s why we have brought in top spoken-word artists and teachers to help each person build and conquer this skill. 

I have special health and dietary restrictions; can I still attend?
Yes, we can accommodate any health and dietary restrictions. If selected, there will be an opportunity to inform the staff of your dietary needs. Over the course of the weekend, we will have a nurse on call who has knowledge and experience with patients living with cystinosis. We are also conveniently located near some of Chicago’s best hospitals. 

Do I have to participate in every workshop?
Yes. Participation is mandatory, but also fun!

Is workshop space limited?
Yes. Due to the structure of our spoken-word workshop and one-on-one involvement, space is limited.

When will I know if my application has been accepted?
All applicants will be contacted by May 16th, 2025.

Who will see my application?
Only the Cystinosis Research Network and the team at Believe Limited. Application information will not be shared with Amgen. Once participants are selected, only participant names will be shared with Amgen, as part of the production.

I have more questions, who can I contact?
Please reach out to Hanna at hanna@believeltd.com or Ed at Ed@believeltd.com