US MEF2C Foundation

06/19/2026

06/18/2026

📣 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.

06/17/2026

📱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/

06/12/2026

🤩Thank you Stella Jeong for sharing your experience as a DPT with the MEF2C Community! We were thrilled to take part in an interactive discussion on hypotonia, a topic so relevant for many in our community.
📽For those unable to attend, please find the recording in the link or QR Code.
https://www.youtube.com/watch?v=Gwvw49fHoTI

06/11/2026

🚴‍♀️Support Team MEF2C United for the Million Dollar Bike Ride 🚴

It's not too late to be part of something incredible! On Saturday, June 13th, we're riding in Philadelphia to support groundbreaking research for MEF2C-related disorders. Every dollar raised goes directly to the US MEF2C Foundation! 💙

📌Learn More & Get Involved https://charity.pledgeit.org/MillionDollarBikeRide/teams/MEF2C
👉 Million Dollar Bike Ride Website: https://www.milliondollarbikeride.org

📱Follow along and tag
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Let’s pedal toward progress together! 🏆💙

06/11/2026

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. More details about the study below.

The purpose of this study: We hope this work will help us learn more about the communication strengths of the individuals in this population so that we can invent new communication technology, create new clinical outcome measures, and empower these individuals to be heard and understood.
We are looking for: 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!

Thank you for your interest in our study! To see whether your child is eligible to participate, please complete the survey below.

06/04/2026

📌 REMINDER 📌
This Saturday is the Resource Connect webinar featuring physical therapist Stella Jeong, DPT for a presentation and Q&A on low muscle tone, home skill-building tips, and navigating therapy services through IEP and 504 plans.

📅 Saturday, June 6, 2026 | 9:00AM CT / 10:00AM ET
Register now 👉 https://usmef2c.click/26Connect_PT
or https://forms.gle/aoiirHwjgvhf9GFYA

05/29/2026

📣 Calling all MEF2C families! Join us for a Resource Connect webinar featuring physical therapist Stella Jeong, DPT for a presentation and Q&A on low muscle tone, home skill-building tips, and navigating therapy services through IEP and 504 plans.

📅 Saturday, June 6, 2026 | 9:00AM CT / 10:00AM ET
Register now 👉 https://usmef2c.click/26Connect_PT
or https://forms.gle/aoiirHwjgvhf9GFYA

05/14/2026

Today we celebrate MEF2C Awareness Day with our growing MEF2C Family to advocate for our rare community. You are all in our hearts. A special shout out to Judy Daprano for all the hours spent to commemorate this special day with a heartwarming video & the lighting of 61 landmarks in 34 US states & Canada, and to MEF2C advocates & organizations across the globe who have helped to shed light on MEF2C 💙💙💙