May is MED13L Awareness Month

An Honest Look at MED13L, Our Community, and the Foundation Behind It MED13L Awareness Month Special | May 2026 This Awareness Month, host Vanessa Dias gets honest — about the spectrum of MED13L, the families the foundation hasn't yet heard from, and what it actually looks like to run a rare disease foundation as a volunteer parent doing the work between therapy drop-offs and bedtime. She also pulls back the curtain on the foundation itself: a small group of volunteer parents, most of them mo...