Thank you next step for this opportunity. To speak on how isolating it can be with someone with a chronic illness especially since I haven’t met anyone with Prune Belly syndrome. https://twitter.com/nextstepfund/status/1639261570415878145
Sharing his experiences and working on Come and Walk a Mile was very important for Ethan, a Next Step participant. He wants to speak up for those living with a #raredisease, give them a voice, show them that they are not alone and they are part of a wider community. Find out why!
One of the challenges that many young people with a chronic illness may face is difficulty in expressing themselves. Finding it hard to share their experiences or to advocate for themselves.
Last year alone, we hosted 161 Song Studio sessions. One-on-one sessions with our music therapist in which we aim to let these young adult participants find their voice. to discover new ways to advocate for themselves.
Sharing his experiences and working on ‘Come and Walk a Mile’ was very important for Ethan, a Next Step participant. He wants to speak up for those living with rare and chronic diseases, give them a voice, and show them that even if they feel isolated, they are not alone and they are part of a wider community.
Ethan joined our collaboration with @pfizerinc and @kendallsquareorch and some of his Next Step peers to record a live version of our song, Come and Walk a Mile. Find out more from Ethan!
Please share so more young people like Ethan know they have a safe community at Next Step to practice using their voice.