US MEF2C Foundation

[US MEF2C Foundation @usMEF2C]

MEF2C patients are invited you to participate in the Blood Biomarker Investigations in Boston and Chicago.

The investigation entails 3 blood draws spaced approximately 6 months apart. The MEF2C diagnosed patient and thier siblings are encouraged to participate.

[US MEF2C Foundation @usMEF2C]

We're excited to add Abby Turnwald as a guest host to the latest Sibling Connect on Sunday, October 18, 2026! Abby brings a wealth of experience in sibling support from other genetic organizations. Please register at https://t.co/XJqFaKQJHH or QR code to be sent the zoom link.

[US MEF2C Foundation @usMEF2C]

🌐💡 Our friends at @SimonsSearchlight just dropped a new quarterly report with updates from families like you! https://t.co/HQMOt6RY6c

Not a current Simons Searchlight participant? Learn how you can be part of the next quarterly report: https://t.co/X52MwOztyu

[US MEF2C Foundation @usMEF2C]

Hot off the press! The August 2026 edition of the MEF2C Beacon is here. https://t.co/UGnxXaXgJU

[US MEF2C Foundation @usMEF2C]

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* Purchase raffle tickets or donate online: Raffle tickets are $10 each.
*Share the cause: Word of mouth is powerful! Please retweet or share our fundraiser flyer with your networks.
* Just come out and show support: Join us at Orono Park on August 9th!

[US MEF2C Foundation @usMEF2C]

Set, Spike, & Support: 4th Annual Volleyball & Raffle Fundraiser! Come out for classic sand volleyball alongside a raffle for beautifully curated gift baskets. A complimentary lunch will be fully provided.
Official Registration & Donation Link:
https://t.co/9Bn2MAK2hd
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[US MEF2C Foundation @usMEF2C]

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* Donate to help support event costs: If you'd like to help offset our food and beverage overhead, you can send direct donations via Venmo to @mtolson10 or @Kelly-Olson-0607. (Minimizing event overhead means more funds go straight to Boston Children's Hospital!)
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[US MEF2C Foundation @usMEF2C]

Early genetic testing can be life-changing for families. That’s why we’re proud to support the campaign to raise awareness about early genetic testing. Mark your calendar for Genetic Testing Action Day on July 25th. Access free resources at https://t.co/T8a7V4b2J1 to get started.

[US MEF2C Foundation @usMEF2C]

1 in 2 people living with a rare disease is undiagnosed. Genetic testing can change that.

Join us on July 25th for Genetic Testing Action Day and help us increase the percentage.
Visit https://t.co/T8a7V4b2J1 to learn more.

[US MEF2C Foundation @usMEF2C]

The US MEF2C Foundation extends our most sincere thanks to Tom Westermeyer, not only for his fundraising from sourdough baked goods, but also for sharing this touching tribute to his grandaughter, Harper. We also warmly thank Harper's father, Luke Leonard, for making the video.💙

[US MEF2C Foundation @usMEF2C]

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🧑‍💼January 2026 Family Research Conference video
🗓️Recent Events – MEF2C Awareness Day, PT Resource Connect, Sibling Connect, Million Dollar Bike Ride, Meet Up in Boston
🤾‍♀️Upcoming Events – TheOlson’s 4th Annual Sand Volleyball Tournament
https://t.co/0lJyMhuMe1

[US MEF2C Foundation @usMEF2C]

Beacon -June edition
https://t.co/0lJyMhuMe1
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[US MEF2C Foundation @usMEF2C]

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This edition includes updates and new information on topics such as:
🩸Longitudinal Natural History Study –
*NEW* Blood Biomarker Investigations
Next round October 2027
📊Simons Searchlight Quarterly Report
https://t.co/0lJyMhuMe1
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[US MEF2C Foundation @usMEF2C]

Calling siblings of MEF2C patients! Join siblings Lexi and Vivian Bean on a zoom call to share experiences of being a sibling of someone with a MEF2C diagnosis on Wed, June 24th at 7:00 pm ET. To receive the zoom link, register at https://t.co/3S4IBq3XVX or use the QR code.

[US MEF2C Foundation @usMEF2C]

Exciting opportunity for MEF2C patients!
If you are interested: Please fill out this short screening survey to determine your eligibility: https://t.co/7jFnjOgifU

[US MEF2C Foundation @usMEF2C]

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.
For those unable to attend, please find the recording in the link or QR Code.
https://t.co/myBH8jJv7K

[US MEF2C Foundation @usMEF2C]

Support Team MEF2C United for the Million Dollar Bike Ride! 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! https://t.co/N0cUVxdcU0