MEF2C Foundation

MEF2C Foundation MEF2C Foundation is partnering with scientists to fund research into MEF2C-gene related conditions

πŸ’š COULD YOU TAKE ON 10K FOR MEF2C? πŸ’šThis September, we have an opportunity to raise some seriously important funds for t...
19/08/2026

πŸ’š COULD YOU TAKE ON 10K FOR MEF2C? πŸ’š

This September, we have an opportunity to raise some seriously important funds for the MEF2C Foundation at the Vitality London 10,000 β€” but we need people willing to step up and help us do it. πŸƒβ€β™€οΈπŸƒβ€β™‚οΈπŸ§¬

Every pound we raise helps us keep pushing towards something our families desperately want:

A different future for children and young adults affected by MEF2C Haploinsufficiency Syndrome (MCHS). ❀️

More research. πŸ”¬
More answers. 🧬
More awareness. πŸ“£
And ultimately, the hope of treatments that could change lives.

So we're asking:

Could YOU take on the Vitality London 10,000 for MEF2C? πŸ’ͺ

You don't need to be an experienced runner. Run it, walk it, wheel it β€” do it your way.

And we'll be behind you. πŸ’š

🌈 We'll help kit you out with MEF2C branded gear for the event.
🀝 We'll support you with your fundraising.
πŸ“£ We'll help share your challenge and get people behind you.
πŸ’š And if you need help with sponsorship, please talk to us.

πŸ“ Vitality London 10,000
πŸ“… September 2026
πŸ’š Fundraising for MEF2C Foundation

Our community is rare, which means we simply don't have the huge numbers behind us that many larger causes do.

We need people willing to help us make those numbers count.

Could you be one of them? πŸ₯ΉπŸ’š

πŸ‘‰ Sign up and take on the challenge for MEF2C:
https://www.letsdothis.com/gb/o/29443/checkout/ticket?preferred=true&eventId=233210&occurrenceId=21111161658

Can't take part? Please share this post. πŸ™

Someone in your friends, family, workplace, running club or local community might be exactly the person we're looking for.

10K. One incredible community. One all-important mission: helping change the future for children and young adults affected by MEF2C. πŸ§¬πŸ’š

London10K TeamMEF2C RareDisease RareDiseaseResearch RareDiseaseCommunity CharityRun Fundraising RunForCharity ChangingFutures TogetherWeCan letsfly strive4five

Run for the Mefties. πŸƒEarly registration is open β€” for a limited time β€” for the Saucony London 10K on 11 July 2027. Clos...
13/07/2026

Run for the Mefties. πŸƒ

Early registration is open β€” for a limited time β€” for the Saucony London 10K on 11 July 2027. Closed roads past Big Ben, the London Eye and Piccadilly Circus, and we want a sea of MEF2C vests on that start line.

You'll be fundraising for the MEF2C Foundation directly β€” every pound keeps Pathways to Hope and Volāre moving at pace.

Two ways in, and either way we kit you out in branded MEF2C gear to run proud in:
πŸ”Ή Self-register and fundraise for the cause, no minimum.
πŸ”Ή Raise Β£500+ and we'll cover your entry fee too.

How big can we make Team MEF2C? Let's find out.

Link below and in comments. When you do register, send us a PM to let us know!

PathwaysToHope RareDisease dogood charityfundraiseri

To our children β€” πŸ’ŒYou didn't ask for this. And we didn't either.But we are here. Fighting for you in labs 🧬, in offices...
04/07/2026

To our children β€” πŸ’Œ

You didn't ask for this. And we didn't either.

But we are here. Fighting for you in labs 🧬, in offices, in government meetings, in fundraising runs, in every shared post and every pound raised. πŸ’ͺ

We are building a future you deserve: one where the doctors have tools, the scientists have funding, and the world knows your name. 🌍

You are not rare to us. You are everything. πŸ’™

letsfly

πŸ“š What is the Volāre Study?Before any treatment can reach a child, regulators need data. Lots of it. πŸ“ŠThat's why the Vol...
01/07/2026

πŸ“š What is the Volāre Study?
Before any treatment can reach a child, regulators need data. Lots of it. πŸ“Š

That's why the Volāre Study exists.

Launched at Weill Cornell Medicine and led by Dr. Zachary Grinspan πŸ‘¨β€πŸ”¬, Volāre is the first and only natural history study for MCHS; designed specifically to meet the requirements regulators need before a clinical trial can begin.

Families participating are helping build the scientific record of what MCHS looks like over time. Their data is the foundation clinical trials will be built on. πŸ—οΈ

Every family who participates is part of making the path to 2028 possible. πŸ’™

RareDisease letsfly strive4five charity dogood

πŸ’¬ Question: what does MCHS look like for your family?No two MEF2C children are exactly alike. 🌈Most are non-verbal. Some...
28/06/2026

πŸ’¬ Question: what does MCHS look like for your family?

No two MEF2C children are exactly alike. 🌈

Most are non-verbal. Some have a few words. Some walk independently, some don't. Some have frequent seizures, others have none.

MCHS is a spectrum, and every child on it is unique. ✨

We'd love to know: how does MCHS show up in your family's life? Drop a word, a sentence,a pic or a πŸ’™ in the comments.

Every voice here matters. Every story builds understanding. πŸ—£οΈ

letsfly Strive4five

🧬 Two candidates in the labHere's something that didn't exist even two years ago: two therapeutic candidates targeting t...
26/06/2026

🧬 Two candidates in the lab

Here's something that didn't exist even two years ago: two therapeutic candidates targeting the MEF2C gene, both showing results in the lab. πŸ™Œ

πŸ”¬ An A*O (antisense oligonucleotide) β€” a molecule that increases MEF2C levels in the brain
πŸ”¬ An AAV (adeno-associated virus) β€” a gene therapy approach doing the same

Both target the root cause of MCHS. Both have shown increased MEF2C expression in preclinical animal models.

This is science moving. Real, funded by our community.

The road to a treatment is not a hope. It's a plan. 🧬

πŸ’› What it feels like: the diagnosisThe day you hear the words "rare genetic condition" is a day you never forget. πŸ’”For m...
26/06/2026

πŸ’› What it feels like: the diagnosis
The day you hear the words "rare genetic condition" is a day you never forget. πŸ’”

For many MEF2C families, the road to diagnosis is long. Years of questions. Appointments without answers. A search for something β€” anything β€” that explains what your child is experiencing.

And then a name. MEF2C Haploinsufficiency Syndrome.

It doesn't change everything. But it changes something. ✨

Because a name means a community. And a community means you're no longer alone. πŸ’™

letsfly strive4five

πŸ“š What is MCHS?Most people have never heard of MEF2C Haploinsufficiency Syndrome.MCHS is a rare genetic condition caused...
25/06/2026

πŸ“š What is MCHS?

Most people have never heard of MEF2C Haploinsufficiency Syndrome.

MCHS is a rare genetic condition caused by a change in the MEF2C gene. It affects around 400–500 people worldwide. 52 of those in the UK πŸ‡¬πŸ‡§.

It can cause:
β†’ Severe intellectual disability 🧠
β†’ Limited or no speech
β†’ Epilepsy ⚑
β†’ Movement difficulties
β†’ Feeding challenges

Behind every statistic is a child. A family. A community that refuses to give up. πŸ’ͺ

Follow along to talk more about what MCHS is and where the science is taking us. πŸ’™

strive4five

πŸ”¬βœ¨ Something exciting is happening this Saturday.This weekend, families in our MEF2C community are coming together for a...
23/06/2026

πŸ”¬βœ¨ Something exciting is happening this Saturday.

This weekend, families in our MEF2C community are coming together for a very special webinar : Pathways to Hope & the Volāre Natural History Study.

Two incredible research programmes, connected, leading toward clinical trial. One conversation. All focused on moving the needle for our children and young adults. πŸ’™

A space where the two principal investigators can connect directly with the families who live this every day, and share the latest developments. Because that's how real progress happens. πŸ’œ Don't miss it!

If you're a parent or carer of a loved one with MEF2C Haploinsufficiency Syndrome and you're not yet part of the MCHS parent support group, drop us a message.

We are building something. Together. And we are not slowing down.

πŸ’œ MEF2CStrong RareDiseaseResearch TogetherWereMEF2CStrong Letsfly strive4five Rare Bird MEF2C Foundation Australia MEF2C Hilfsorganisation e.V.

πŸŒˆπŸ’œΒ THANK YOU. From the very bottom of our hearts.This weekend, Minnie-Mae's family and friends laced up their trainers, ...
23/06/2026

πŸŒˆπŸ’œΒ THANK YOU. From the very bottom of our hearts.

This weekend, Minnie-Mae's family and friends laced up their trainers, got absolutely covered in colour, and ran their hearts out β€” and YOU showed up for them in the most extraordinary way.

Β£3,050 raised. 117 donations. Every single one of them matters.

This money goes directly towards research that could change the lives of children like Minnie-Mae β€” children living with MEF2C Haploinsufficiency Syndrome. Children who deserve every chance to access the treatments and therapies that will help them live their absolute best lives and reach their full potential.

That's what this is all for. That's who every pound is for. πŸ’™

To everyone who donated, shared, cheered, and showed up β€” in person or from afar β€”Β Team Minnie-Mae sees you. The MEF2C Foundation sees you. And Minnie-Mae sees you.

We will make every penny count.Β πŸŽ‰

πŸ’œ RareDisease TogetherWereMEF2CStrong
Ellie Richards

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124 City Road
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EC1V2NX

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