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 mothers, all of them living a version of the same life you are — and what it would mean for the whole community to lean in just a little more.
In this episode:
- Updates on the patient census, genetic report uploads, and the Million Dollar Bike Ride in Philadelphia on June 13th
- Why those "me too" threads on Facebook need to make their way to the registry
- The full spectrum of MED13L — medically, developmentally, and across families
- An honest look at who runs this foundation and how the work actually gets done
- The hiring of a Chief Scientific Officer and what that means for research
Connect & Get Involved:
Want to be featured on the podcast? Or host your own episode? Email vdias@med13l.org
🔬 Research opportunities: med13l.org/research-hub/join-med13l-research-opportunities
📄 Latest publications: med13l.org/research-hub/publications
📧 Reach the team: info@med13l.org
🚴 Join the Million Dollar Bike Ride team: June 13th, Philadelphia
Support the show
Resources
Strides for Stripes: Move for Mito | Pledgestar campaign
Denver Mini-Conference: Get your tickets
MED13L Awareness Campaign: https://secure.qgiv.com/event/med13lfoundationp2p/
Profile Frame for Socials
Community Enrollment Form
Community Checklist: Google Drive Link
CRID: thecrid.org
Citizen Health: citizen.health/partners/med13l-foundation
Simons Searchlight: https://research.simonssearchlight.org/account/create
Rare-X: rare-x.org/med13l
Link Tree: List of Resources
Website: med13l.org
Facebook: facebook.com/med13lfoundation
Instagram: instagram.com/med13lfou...
