US MEF2C Foundation

📣 Calling siblings of MEF2C patients!

🚸 Join siblings Lexi and Vivian Bean on a zoom call to connect and share experiences of being a sibling of someone with a MEF2C diagnosis. The Bean sisters would like to have a chat about topics like -how to explain the diagnosis to others, spending quality time with parents/siblings, and share resources for siblings. Plus, plan for future sibling zoom calls.

⏰The zoom will take place on Wednesday, June 24, 2026 at 7:00 pm ET/6:00 pm CT/5:00 pm MT/4:00 pm PT.

💻To receive the zoom link, please register at bit.ly/4v4nEh0 or use the QR code pictured.

📱See this exciting opportunity for MEF2C patients!

🗣️ The Neurodevelopmental Dynamics (NDD) Lab at Northeastern University, directed by Dr. Kristina Johnson is conducting this study to better understand how vocal communication in non- and minimally-speaking individuals change over time.

📊 If we have enough participation from the MEF2C community, they can publish a paper on findings! This is very exciting for MEF2C and a great means to measure progress in our patients.

🎙️ The purpose of this study: To learn more about the communication strengths of the individuals in our population so that we can invent new communication technology, create new clinical outcome measures, and empower these individuals to be heard and understood.

🎟️ Participants: Non/minimally-speaking individuals between the ages of 6 to 35 years old with under 100 spoken words and their parents, caregivers, or guardians to take part in our study.

📋 The study involves: Completing a parent interview, surveys, and using a custom built smartphone app to record vocalizations at home. Each study session will be under 3 hours to complete.

💰 You will receive: If you are eligible to participate, your family will receive an $80 gift card for completing the study session and questionnaires (totaling $400 over 2 years).

❗️ If you are interested: Please fill out this short screening survey to determine your eligibility: https://redcap.link/evoca
Please email [email protected] if you have any questions or want more information!

https://nddlab.sites.northeastern.edu/