MEF2C Foundation

25/05/2026

Happy Monday to our MEF2C families around the world 💙

For those of us in the UK & US it's a Bank Holiday today, an extra day to slow down, breathe, and be together.

We'll be honest. Life doesn't pause for days off in our world. There are medications to give, therapies to prep, appointments to chase, and research to keep pushing forward.

But there is also tea. And probably biscuits. And the kind of love for our children that makes all of it worthwhile. ❤️

If this page has ever meant something to you, or if you know someone who might need to find us, a share today would mean the world. One share could reach a family who just got a diagnosis and has no idea we exist yet. 💙

And just for fun, drop a ☀️ or ☔ in the comments to tell us what the weather's like where you are today. We're nosy like that. 😄🌍

Sending love to every single one of you, wherever you are today.

❤️ MEF2C Foundation

YouAreNotAlone GlobalMEF2CCommunity MEF2CFamily

23/05/2026

A chance to help us gather the data we need to meet pre-clinical trial requirements! 💙🙏🌟

The virtual arm of the Volare Study at Cornell is filling up! We have 15 spots left. For those who have not been able to participate in person, please join virtually. The more participants we have, the more stronger our data collection, the more robust our conclusions, and the more prepared we are for clinical trial. Please find the enrollment link on the Rare Bird homepage or email [email protected].

21/05/2026

🚫 MYTH vs ✅ FACT
🚫 MYTH: "Rare disease charities are mainly focused on raising awareness, not actually funding science."
✅ FACT: The MEF2C Foundation is directly funding a multi-year therapeutic development programme with the Medical University of South Carolina (MUSC). Our Pathways to Hope programme is active, funded research aimed at developing real treatments — not just awareness campaigns.

We are proud to be a foundation that puts donations directly into the science. Every pound raised brings us closer to a treatment for our Mefties. 💙

💙 Follow for regular myth-busting and the latest on our research to develop a treatment for MEF2C Haploinsufficiency Syndrome.

RareDisease RareDiseaseUK RareFacts DidYouKnow letsfly Strive4Five

20/05/2026

💙 We made the Daily Mail!

Little Minnie Mae is 3 years old, has MEF2C haploinsufficiency, and she is absolutely extraordinary. Her story is now being read by millions — and we couldn't be more proud.

On 20th June, 40 friends and family are running for Minnie and for every child affected by MEF2C Haploinsufficiency. There is a treatment in development — and funding is the only thing standing in the way.

Read her story. Share it. And if you can, donate — every single penny gets us closer. 💙

📰 Full article + donation link in the comments below.

strive4five letsfly

17/05/2026

💙 We are so proud of Vikki Lawrence and her son Laike, whose story was published in the Basingstoke Gazette this week — and what makes it even more special is that it landed on our second annual MEF2C Awareness Day, 14th May. 💙

Laike lives with MEF2C Haploinsufficiency Syndrome and is non-verbal, fed via a PEG tube, and lives with complex epilepsy including rare gelastic seizures. Vikki has channelled every bit of that journey into fighting for awareness and research — and we are in awe of her.

Ahead of Awareness Day, Laike's sister Sienna's school — Whitewater Church of England Primary School in Rotherwick — held a 'Wear Blue to School' day. The children, parents and staff raised an incredible £215 for MEF2C research. 💙

Vikki said it best herself:

"Seeing a sea of blue across the playground was such an emotional moment for our family and something we will never forget. We are completely blown away by the kindness and generosity shown by the children, parents, and staff."

Vikki and her family have also organised celebrity charity football matches at Chertsey Town FC and Hartley Wintney FC, with supporters including Danny Dyer, Jake Wood and more giving their time to help raise awareness.

There is still no cure for MEF2C Haploinsufficiency Syndrome. Every share, every donation, and every conversation brings us closer to the funding that can change that.

Read Vikki and Laike's full story in the Basingstoke Gazette here 👇
https://www.basingstokegazette.co.uk/news/26106260.family-child-living-mef2c-calls-research/

And if you'd like to support research, you can donate at:
🔗 www.mef2cfoundation.com/donate

Basingstoke Gazette Whitewater C of E Primary School Vikki Lawrance

14/05/2026

Today is MEF2C Awareness Day. 💙

Most people have never heard of MEF2C Haploinsufficiency Syndrome. Today, we change that.

Our children are joyful, determined, and full of personality. They are also living without a single approved treatment. Not one. Every day their families fight for them — fighting for answers, for support, for science, for a future.

That future is closer than it has ever been. Researchers are developing treatments that target the root cause of this condition for the first time in history. But we need awareness. We need funding. And we need you.

Today, please do one thing:

💙 Share this post. That's it. One share reaches people we never could alone — and one of them might be the person who changes everything.

For our Mefties. For their families. For the treatment that is coming — if we keep pushing.

💙 www.mef2cfoundation.com

MEF2CStrong Strive4Five letsfly

13/05/2026

🚫 MYTH vs ✅ FACT

🚫 MYTH: "Children with MEF2C Haploinsufficiency Syndrome cannot communicate or connect with others."

✅ FACT: Every child with MCHS is different. While many have absent or very limited speech, children with MCHS often communicate through facial expressions, gestures, sounds, eye contact, and assistive technology. They form deep bonds with their families and carers and experience joy, love, and personality in full.

Misinformation about MCHS keeps our children misunderstood and families isolated. Every fact shared is a step toward changing that.

💙 Follow for regular myth-busting and the latest on our research to find a treatment for MEF2C Haploinsufficiency Syndrome.

RareDisease RareDiseaseUK RareFacts DidYouKnow letsfly Strive4Five MEF2CAwarenessDay

12/05/2026

💙 A quick MCHS treatment development update — and an honest ask.

Three years ago we were told nothing could be done for our children. So we decided to do it ourselves.

We partnered with Dr. Christopher Cowan at MUSC — not just a grant and a goodbye, but a real, ongoing collaboration with a team that genuinely cares about the children at the end of this work. Last month one of our trustees sat face-to-face with Dr. Cowan and his team to review progress and plan what comes next. That relationship is what keeps this moving.

Here's where we are:

✅ Two therapeutic candidates under development — an A*O and an AAV — both targeting the root cause of the haploinsufficiency by increasing MEF2C levels in the brain
✅ Increases in MEF2C expression shown in preclinical animal models
✅ The Volārē Study launched at Weill Cornell — the first-ever natural history study for MCHS
✅ Over $1 million raised by our global community — every dollar in the MUSC lab or developing our natural history through Volare.
🔌 Still to fund: preclinical optimisation, toxicology (two animal species), manufacturing, FDA pre-IND
🎯 Target: first-in-human trial 2028

None of this is guaranteed. Toxicology alone costs hundreds of thousands of dollars. Without it, everything stops. The progress above exists because of you — and we need you to keep going.

Tomorrow is MEF2C Awareness Day. Share this. Donate what you can. Tell one person.

Don't let the momentum stop here. 💙

Donate: at mef2cfoundation.com or link in bio/comments.

RareDisease MEF2CFoundation Volare Cornell MUSC Rarebird

12/05/2026

💙 Tue 12 May — 2 days to go

The research into MEF2C Haploinsufficiency Syndrome is real, it is specific, and it is happening right now.

At MUSC, targeted treatments are being developed through the Pathways to Hope project at MUSC.
At Cornell, the Volare natural history study is building the foundational understanding of how this condition progresses over time.
These aren't distant hopes — they are active, ongoing efforts that need continued support to move forward.

But momentum in rare disease research is hard to build and easy to lose. The mountain is high. And for the families climbing it every single day alongside their children, it can be difficult to see the light at the end of the tunnel.

That's why awareness matters so much. Every share, every donation, every person who learns the name MEF2C for the first time adds to the momentum these families and researchers need.

Two days until MEF2C Awareness Day. Don't let it pass quietly. 💙

🖼️ Personalise a post template with your child's name and photo 1 #: https://canva.link/1u21g07l1mipvjh

🖼️ Personalise a post template with your child's name and photo 2 # https://canva.link/hxwa4frgiakj4jw

🔵 🔵 Update your profile picture in solidarity for you and/or your meftie: https://canva.link/ab590c1jhb7ki9v

Share this post. Update your profile picture. Donate what you can. Help us carry this further. 💙

Donate via the link in comments/bio.

RareDisease MEF2CFoundation RoadToACure MCHS letsfly Strive4five Rarebutmighty Rarediseaseawareness Charity Dogood Fundraiser MUSC WeillCornell

31/12/2025

✨ Happy 2026 to our MEF2C Family worldwide! ✨
Thank you for the strength, hope, and connection you bring to this community. 🌍💙

Here’s to progress, joy, and brighter days ahead for every MEF2C child and family. 🌟💪

We step into the new year together. 💫