MEF2C Family Foundation

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MEF2C Family Foundation Our community of families, advocates, and professionals are committed to supporting those with MEF2C related disorders.

We collaborate with researchers and clinicians to deepen knowledge, advance therapies, and push toward a cure.

🎃👻 Our MEF2C stars are looking SPOOK-tacular this Halloween! ✨We want to see your little ghosts, goblins, superheroes, a...
10/30/2026

🎃👻 Our MEF2C stars are looking SPOOK-tacular this Halloween! ✨

We want to see your little ghosts, goblins, superheroes, and princesses! 🧡💜

📸 Share your MEF2C star’s Halloween costume in the comments below!

Happy Halloween from the MEF2C Family Foundation! 🎃

Applications open on the 1st! 🇺🇸🇨🇦The Oracle Health Foundation offers pediatric grants of up to $17,000 to help cover me...
10/30/2026

Applications open on the 1st! 🇺🇸🇨🇦

The Oracle Health Foundation offers pediatric grants of up to $17,000 to help cover medical expenses, therapies, specialized equipment, and other healthcare needs not covered by insurance.

📅 Applications are open from the 1st through the 15th of each month, or until the maximum number of applications is received.

🔗 Learn more and apply:
https://www.oraclehealthfoundation.org/pediatric-grants/

Please share with families who may benefit!

10/29/2026

Applications are open for CNF's 2026 Harnett Grant. 💜

Thanks to the Harnett Family, CNF is offering one $1,000 grant to a family with a child living with infantile spasms. It can help pay for medical bills that insurance doesn’t cover.

You can apply now through November 13th. Know a family who might need this? Please share this post with them.

Read the details and apply here: https://www.surveymonkey.com/r/2026HarnettGrant

🧬 𝐄𝐱𝐜𝐢𝐭𝐢𝐧𝐠 𝐔𝐩𝐝𝐚𝐭𝐞𝐬 𝐢𝐧 𝐌𝐄𝐅𝟐𝐂 𝐆𝐞𝐧𝐞 𝐓𝐡𝐞𝐫𝐚𝐩𝐲 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡!Want to hear the latest information on MEF2C gene therapy progress? Jo...
10/24/2026

🧬 𝐄𝐱𝐜𝐢𝐭𝐢𝐧𝐠 𝐔𝐩𝐝𝐚𝐭𝐞𝐬 𝐢𝐧 𝐌𝐄𝐅𝟐𝐂 𝐆𝐞𝐧𝐞 𝐓𝐡𝐞𝐫𝐚𝐩𝐲 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡!

Want to hear the latest information on MEF2C gene therapy progress? Join us on 𝐒𝐮𝐧𝐝𝐚𝐲, 𝐍𝐨𝐯𝐞𝐦𝐛𝐞𝐫 𝟖𝐭𝐡 𝐚𝐭 𝟒 𝐏𝐌 𝐄𝐓/ 𝟑 𝐏𝐌 𝐂𝐓 for a webinar featuring top experts in the field.

🔹𝐃𝐫. 𝐒𝐭𝐞𝐯𝐞𝐧 𝐆𝐫𝐚𝐲 (𝐔𝐓𝐒𝐖) will share updates on his lab's preclinical MEF2C gene therapy research and explain the science behind AAV9, and the novel capsid CapX.

🔹𝐃𝐫. 𝐁𝐫𝐚𝐧𝐝𝐨𝐧 𝐇𝐞𝐧𝐫𝐲 (𝐀𝐮𝐫𝐞𝐥𝐢𝐱 𝐁𝐢𝐨) will break down the regulatory pathway forward and how rare disease therapies progress from benchside to bedside.

🗓️ 𝐃𝐚𝐭𝐞:Sunday, November 8, 2026
⏰ 𝐓𝐢𝐦𝐞: 4 PM ET / 3 PM CT
📍 Save your spot: https://forms.gle/rQJnVWouEpdbvpdPA

Steven Gray, Ph.D., is a Professor in the Department of Pediatrics at UT Southwestern Medical Center, co-director of the UTSW Gene Therapy Program, and director of the UTSW Viral Vector Facility. He holds a Ph.D. in molecular biology from Vanderbilt University and completed postdoctoral training at the UNC Chapel Hill Gene Therapy Center. A leader in AAV vector engineering and viral vector manufacturing, Dr. Gray’s research focuses on developing adeno-associated virus (AAV) gene therapies for rare, severe central nervous system disorders and facilitating their translation from benchside to Phase I clinical trials.

Brandon M. Henry, M.D., FACSc, is a physician-scientist serving as the Chief Executive and Medical Officer at Aurelix Bio, as well as Chief Medical Officer for the FOXG1 Research Foundation. He specializes in the clinical and regulatory development of gene replacement therapies for rare genetic diseases. His work centers on translating complex, gene-directed science into patient-centered clinical programs and navigating regulatory pathways to advance therapies safely from preclinical models to human trials.

What are caregivers really saying? If you care for a child with a neurologic condition, the Child Neurology Foundation w...
10/22/2026

What are caregivers really saying?

If you care for a child with a neurologic condition, the Child Neurology Foundation wants to hear from you! Take CNF's 2026 Caregiver Needs Assessment to help build better supports for families like yours, and you'll be entered for a chance to win a FREE Mightier Tablet or SAMi-3 Camera.

Scan the QR code or visit the link to take the survey, and please share with another caregiver! https://www.surveymonkey.com/r/MDRCC9X

10/21/2026

💜 Help us find our next Universal Changing Place!

Universal Changing Places is excited to be working with the Greyson Channing Foundation to bring more accessible, dignified restroom facilities to communities.

Our primary focus is public libraries, but we're open to exploring other public locations.

📍 Do you know a library or community facility that could benefit from a Universal Changing Place?

We'd love your suggestions and the opportunity to work together to make it a reality!

🌐 www.universalchangingplaces.org
🌐 www.greysonchanningfoundation.org

Designed for many. Essential for some. Better for everyone.

Today is  .More than 30 partners have come together to raise awareness, share resources and spark conversations about se...
10/21/2026

Today is .

More than 30 partners have come together to raise awareness, share resources and spark conversations about seizure safety and SUDEP.
Every conversation is an opportunity to inform, empower and take action. Together, we can make a difference.

Join us. Share. Start a conversation. Help .

Learn more: https://pameonline.org/ & https://sudep.org/

10/20/2026

Research is helping us better understand why some seizure-related deaths happen.

A recent study explored connections between febrile seizures, sleep and sudden unexplained death in childhood (SUDC), identifying possible differences in arousal that warrant further study.

Every new insight brings us closer to better understanding and prevention. Read the study: https://www.sciencedirect.com/science/article/pii/S0887899425001705?via%3Dihub

10/20/2026

Register Now! The PAME Conference convenes epilepsy researchers, health care providers, non-profit professionals, and people impacted by epilepsy, including the bereaved, to share knowledge and work together to prevent epilepsy mortality. PAME's 2026 meeting will be held in Denver, CO on December 3rd, 2026 with the family session occurring the day before on December 2nd.

https://pameonline.org/2026-pame-conference/

Join Epilepsy Foundation of America for a one-and-a-half-hour in-depth webinar in partnership with Rhythmlink Internatio...
10/19/2026

Join Epilepsy Foundation of America for a one-and-a-half-hour in-depth webinar in partnership with Rhythmlink International, LLC focused on EEG, Sleep & SUDEP: What People with Epilepsy and their Families Should Know.

This webinar will help people with epilepsy and their families and caregivers understand three connected topics — EEG (electroencephalogram), sleep, and SUDEP and how each relates to overall health and seizure safety. Consistent with what people with epilepsy and caregivers say they want, this session leads with hope: most SUDEP risk factors are things attendees and their care teams can act on together.

Register Here: https://events.zoom.us/e/view/AA1QA47zTSqAr4NFntnCNQ/purchase

Address

2389 Main Street Ste 100
Glastonbury, CT
06033

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