Introducing Phil Buta & The Importance of Surveys

Episode 2: Introducing Phil Buta & Why Surveys Matter

In 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 needed

This 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?
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Resources
Be Counted in the 2025 Census: med13l.org/research-hub/join-med13l-research-opportunities/med13l-registry-enrollment

Community Checklist: Google Drive Link

CRID: thecrid.org

Citizen Health: citizen.health/partners/med13l-foundation

Rare-X: rare-x.org/med13l

Website: med13l.org

Facebook: facebook.com/med13lfoundation

Instagram: instagram.com/med13lfoundation

YouTube: youtube.com/@med13lfoundation/videos

Glossary: 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.