ACTA2 Alliance UK

26/06/2026

It’s continuing, this time worldwide ☀️

If you missed sharing your selfie the first time round, get involved! Every selfie counts 😎

In 7 days, we are taking over International Sunglasses Day for MSMDS and ACTA2... and we want you with us! 🕶️

On June 27th, join and to help more people hear about MSMDS and ACTA2-related conditions.

It’s easy:

🕶️ Put on your coolest sunglasses
📸 Take a photo or selfie
🏷️ Use , and
🔗 Share the campaign link
💜 Add a $5 donation if you can

You can donate, share, or do both. The point is to help MSMDS and ACTA2 reach more people.

‼Your mission for this week: find three allies to join you on June 27th.

We are now close to $13,000 raised in the U.S. toward our $30,000 goal for ACTA2 and MSMDS research. And after the big hit this campaign was for ACTA2 Alliance UK, we didn't want to miss the fun 😎

Let’s use these final days to get closer!

Donate here:
https://www.zeffy.com/en-US/peer-to-peer/turn-msmds-day-into-more-than-awareness

See you behind the shades 😉

#

BTW! We left in the comments some pills of information you can coy and paste to add to your posts/stories for 👇 To help you raising awareness easily!

16/06/2026

One year ago today, Lily had open-heart surgery. ❤️

What we didn’t know then was that her PDA (Patent Ductus Arteriosus) which is a small blood vessel near the heart that should close after birth - a hallmark feature of ACTA2 R179H - would lead us to a rare genetic diagnosis and a completely new journey.

One year later, we’re celebrating her strength, her recovery, and the launch of ACTA2 Alliance UK to help raise awareness and support other families affected by ACTA2.

Happy Heart Anniversary, Lily. ❤️

11/06/2026

⚽️ KEEP IT UPPY 🕶

As the World Cup kicks off, let’s keep the momentum going for .

🕶 Wear your shades
📸 Share your photo
🏷 Tag ACTA2 Alliance UK
📲 Nominate 3 friends

Every post helps raise awareness. Every share helps spread the message. 💛

Come on Team GB 🇬🇧

10/06/2026

Today is MSMDS Day 🎊 A day to celebrate the community that has carried us this far 🫶

A community built by families, children, young people, adults, clinicians, researchers, friends and supporters who have kept showing up, sharing, asking, fundraising, learning, connecting and believing that progress is possible.

This year, to mark MSMDS Day, we wanted to celebrate that community through some of the wishes of the children and families who are part of it.

Their wishes are full of childhood, freedom, family, ordinary life and hope. And they remind us why research matters so much: because progress is what can bring many of those wishes closer for everyone living with MSMDS and ACTA2-related conditions.

This June, through our Building a Legacy Together campaign, we are working to raise $30,000 to support MSMDS and ACTA2 research. We have already passed $7,000, and there are many family-led events and online fundraisers still ahead of us this month.

Please watch the video, share it, and send it to someone who might care. And if you can, consider making a donation today in honor of MSMDS Day:
https://www.zeffy.com/en-US/peer-to-peer/turn-msmds-day-into-more-than-awareness

Every contribution, every share, makes this condition less invisible, and helps us keep building this legacy for the families living with MSMDS today, and for those who will come after them.



Remember you can also contribute to research by donating locally in:

🇨🇦 Canada: Fondation Famille Larry Bélanger pour Victoria-maladie rares

🇧🇪 Belgium: Victor MSMDS Ferrières

🇪🇸 Spain: Qué Pupilas Más Grandes Tienes

🇬🇧 United Kingdom: ACTA2 Alliance UK

THANKS FROM OUR WHOLE COMMUNITY

https://youtu.be/7yFtLvpO9jk

Building A Legacy for the MSMDS Community Today is MSMDS Day, and...

10/06/2026

🌍 Today, for MSMDS Day, we’re joining a global movement.

ACTA2 Alliance UK has launched a fundraising campaign that is already having an incredible impact, raising over £2,000 for research in just half a day.

The campaign is simple, fun, and powerful:



🕶️ Put on your sunglasses
📸 Snap a photo
💛 Donate 5
👥 Nominate 3 friends to do the same
‼And don't forget to tag ACTA2 Alliance and add

Because this is about more than fundraising.

It’s about awareness.
It’s about visibility.
It’s about showing families affected by Multisystemic Smooth Muscle Dysfunction Syndrome that they are not alone.

So today, we’re adding our voices and our energy from the US and inviting our whole community to take part.

Put on your shades, have fun, donate if you can, nominate your friends, and help us celebrate MSMDS Day globally.

🇬🇧Support the campaign in the UK: https://www.justgiving.com/campaign/shades

🇺🇸Or contribute to research from the US:
https://www.zeffy.com/en-US/peer-to-peer/turn-msmds-day-into-more-than-awareness

Either way, all funds will support research for MSMDS and ACTA2 conditions 😊

08/06/2026

What is ACTA2?

ACTA2 and MSMDS is a rare genetic condition that affects how the body functions including how the eyes respond to light.

For children living with it, something as simple as sunlight can feel overwhelming.

Sharing this helps raise awareness.
Supporting this helps drive change.

To donate and support, click the link in our bio or text SHADES to 70085 to donate £5. Texts cost the chosen donation amount plus one standard network rate message.

02/06/2026

On 10th June 2026, we’re asking you to do something simple:

🕶 Put on your sunglasses
🏷 Tag
📲 Nominate 3 friends
💛 Donate

It’s called

Why sunglasses?

Because for children living with MSMDS, light sensitivity is part of everyday life. Something most of us never think twice about can be overwhelming.

This small action helps raise awareness for a condition most people have never heard of - and supports the families living with it.

To donate and support, click the link in our bio or text SHADES to 70085 to donate £5. Texts cost the chosen donation amount plus one standard network rate message.

02/06/2026

Something is coming...

🕶 A simple action
💛 A powerful impact

10th June 2026

24/05/2026

A day in the life with MSMDS 💜

Come with us to Lily’s neurology appointment at GOSH. We talked through her MRA results.

Every appointment, every conversation, every challenge strengthens our determination to keep raising awareness, pushing for answers, and supporting families living with rare disease.