May is MED13L Awareness Month

An Honest Look at MED13L, Our Community, and the Foundation Behind ItMED13L Awareness Month Special | May 2026This 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 13thWhy those "me too" threads on Facebook need to make their way to the registryThe full spectrum of MED13L — medically, developmentally, and across familiesAn honest look at who runs this foundation and how the work actually gets doneThe hiring of a Chief Scientific Officer and what that means for researchConnect & Get Involved: Want to be featured on the podcast?  Or host your own episode?  Email [email protected]🔬 Research opportunities: med13l.org/research-hub/join-med13l-research-opportunities 📄 Latest publications: med13l.org/research-hub/publications 📧 Reach the team: [email protected] 🚴 Join the Million Dollar Bike Ride team: June 13th, Philadelphia Support the showResourcesMED13L Awareness Campaign: https://secure.qgiv.com/event/med13lfoundationp2p/Profile Frame for Socials: https://twb.nz/med13lfoundationBe Counted in the 2025 Census: https://med13l.org/patient-registry-genetic-report-stubmission/Million Dollar Bike Ride: https://charity.pledgeit.org/MillionDollarBikeRide/teams/@med13lCommunity Checklist: Google Drive LinkCRID: thecrid.orgCitizen Health: citizen.health/partners/med13l-foundationSimons Searchlight: https://research.simonssearchlight.org/account/createRare-X: rare-x.org/med13lWebsite: med13l.orgFacebook: facebook.com/med13lfoundationInstagram: instagram.com/med...