Episode 2: Introducing Phil Buta & Why Surveys MatterIn this episode, we welcome Phil Buta, the newest leadership voice at The MED13L Foundation. With nearly 20 years in nonprofit work, Phil shares what inspired him to join our community and how he hopes to support fundraising, research, and long-term strategy.We also break down one of the most important topics for every MED13L family: why surveys and data collection are essential for advancing research. Katie, Inon, and Vanessa explain how caregiver surveys, medical record uploads, and CRI numbers directly shape what scientists can study and how clinicians understand our children.Topics include: • Phil’s background and what brought him to the Foundation • The role of Citizen, RareX, and the CRI in research • How caregiver-reported data becomes the backbone of scientific progress • New Citizen incentives and the AI Advocates tool • Why the ORTA Toileting Study may become a key biomarker • How publications influence clinical care—and why our community’s data is neededThis episode offers a clear, practical guide to the steps that help move MED13L research forward. Every family’s participation matters, and every story strengthens the path toward future treatments.Questions or need guidance? 📧 [email protected] the showResourcesBe Counted in the 2025 Census: med13l.org/research-hub/join-med13l-research-opportunities/med13l-registry-enrollmentCommunity Checklist: Google Drive LinkCRID: thecrid.orgCitizen Health: citizen.health/partners/med13l-foundationRare-X: rare-x.org/med13lWebsite: med13l.orgFacebook: facebook.com/med13lfoundationInstagram: instagram.com/med13lfoundationYouTube: youtube.com/@med13lfoundation/videosGlossary: med13l.org/knowledge-base/glossary Music 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.

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