The 3rd round of in-person assessments, for the MEF2C longitudinal natural history study with the Lab of Dr. Wendy Chung, will take place in Oct 2027. Our 1st, 2nd & 3rd rounds of assessments cover a span of 3 years of patient development, to effectively measure changes. (con't)
(con't) in vital MEF2C research to create the largest comparable dataset of MEF2C patients for our natural history study! This facilitates a better understanding of disease progression, informs clinical care and clinical trial design. (con't)
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.
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 bit.ly/4dQNXkb or QR code to be sent the zoom link.
🌐💡 Our friends at @SimonsSearchlight just dropped a new quarterly report with updates from families like you! simonssearchlight.org/resear…
Not a current Simons Searchlight participant? Learn how you can be part of the next quarterly report: bit.ly/Why_Join_Simons_Searc…
Hot off the press! The August 2026 edition of the MEF2C Beacon is here. usmef2c.click/BeaconAug2026
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:
givebutter.com/teegan-olson-…
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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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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 StartGenetic.org to get started.
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 StartGenetic.org to learn more.
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.💙
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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
usmef2c.click/BeaconJune2026
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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
usmef2c.click/BeaconJune2026
