The Voices of MED13L

Episode 1: Welcome & Where We’re HeadedHosted by Vanessa Dias & Katie BoychuckIn this trailer episode, we introduce the hosts and The MED13L Foundation—how it started, what drives us, and why this podcast exists.Whether you're navigating a new diagnosis, supporting a loved one, or working in research or medicine, this episode offers a personal and accessible introduction to MED13L Syndrome and the global community coming together around it.We share the story of how the Foundation began, our mission and values, and what success looks like as we push toward earlier diagnoses, stronger family support, and meaningful progress in research.What you’ll hear in this episode:– Meet your hosts– How the MED13L Foundation came to be– Our mission, values, and goals– How we’re building connection, support, and hope– What to expect from future episodesResourcesRegister with the Foundation’s Census: HEREAccess the Community Checklist: HERECitizen Health: https://www.citizen.health/partners/med13l-foundationRare-X: https://rare-x.org/med13l/Website: www.med13l.orgFacebook:  https://www.facebook.com/med13lfoundation/Instagram:  https://www.instagram.com/med13lfoundation/#Next up:Updates and the Foundation’s most pressing needs.Submit topics you'd like to hear covered HEREMusic Credit: Intro and outro music for the Voices of MED13L Foundation podcast was composed and performed by Sophie Seaver, sibling of an individual with MED13L syndrome. We thank Sophie for sharing her talent with our community.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...