Alan Chaulet has Duchenne and lives in Lexington, Massachusetts. Diagnosed in 1993, he’s now 34 years old and has served in many advocacy positions. He shares his advice for those who feel disempowered as care partners in clinical spaces.

Empower yourself, like do the research — understand the facts, all the different medicines out there. And think there’s quite a few things you can do, but yeah, you definitely have to be empowered as a patient and know that they simply work for you.

Like, you’re in charge of what care and medicines you do take. I think definitely doing the research, also speaking with other families and see what works, what doesn’t, doing what your specialists say. But I think the most important thing is being empowered as a patient.