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Podcast: Staying Positive while living with Cystinosis

February 29

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Welcome to our podcast series – Cystinosis Rare: A Journey into the Unknown.

Lead by the Adult Leadership Advisory Board (ALAB), this series will focus on issues specific to our rare disease.

The initial podcast episode launches on Rare Disease Day – February 29, 2020.

This episode focuses on positive aspects and inspiring stories of adults living with cystinosis. There will be two featured guests: William Brink and Shannon Keizer. William (Bill) will discuss his journey and how his brother inspired him to start weightlifting. Shannon will share her experience from overcoming low mental health to working towards a nursing degree.

ALAB hosts will be Jana Healy, Sara Healy, Steve Scheudler, and Cheryl Simoens. All four are adults living with cystinosis.

The episode will be approximately 1 hour in length.

Subscribe to our YouTube page and receive an email alert when the podcast is available: http://bit.ly/2Y28tsx on Saturday, February 29th. We hope you tune in!