ACTA2 Alliance UK

23/10/2026

Why might someone with MSMDS be prescribed losartan? 💊

MSMDS can affect the cardiovascular system, including the aorta - the main artery that carries blood away from the heart.

Losartan is a medication that lowers blood pressure. For some people, it may be used as part of their care to help manage aortic enlargement by reducing the pressure and stress placed on the aortic wall.

However, Losartan doesn’t correct the underlying ACTA2 genetic change, and there is limited evidence specifically relating to its effectiveness in people with MSMDS. Medication and monitoring plans are tailored to each individual by their specialist medical team.

Because MSMDS is so rare, there’s still a lot we need to learn about the best ways to manage its complications.

Continued research is important to improve our understanding of the condition and work towards better treatment options for the future. 💙

Disclaimer: This post is for educational and awareness purposes only. It is not intended to replace medical advice, diagnosis or treatment. Medication decisions should always be discussed with a qualified healthcare professional. Never start, stop or change medication without advice from your specialist medical team.

21/10/2026

We still can’t quite believe how far we’ve come in the last six months. 💙

If you’re new here, this is our daughter, Lily. She has MSMDS, an extremely rare genetic condition caused by a change in the ACTA2 gene. Since her diagnosis, we’ve learnt just how little is known about the condition and how much more needs to be done to support the children and families affected.

That’s why, since starting ACTA2 Alliance UK in April, we’ve been on a mission to raise as much awareness and funding for research as possible.

From a 24-hour Move-a-Thon to Padel tournaments, we’ve been finding different ways to bring people together, raise money and help more people understand ACTA2-related conditions.

And so far, we’ve raised an incredible £43,000 for research!

That number represents so much more than money. It’s every donation, every fundraiser, every event and every person who has shared our story or chosen to stand alongside families affected by MSMDS.

There is still so much we don’t know about ACTA2-related conditions, and we want to help change that. Every bit of support helps us raise awareness, advance research and work towards better treatment options for Lily and all the other children and families affected.

We’re so grateful to everyone who has helped us get this far. And we’re only just getting started!

Follow our journey to see what we do next. 💜

13/10/2026

In August, we hosted our Rally for Research padel tournament - and while we were there, we had to settle a very important debate… 👀🎾

How is Padel pronounced?

We asked our players and sponsors what they thought, and let’s just say… there were some very strong opinions! 😂

But whatever you call it, we loved seeing everyone come together for a brilliant day of sport, fundraising and supporting ACTA2 research.

And we’ve loved seeing that same community spirit continue through our Move-a-Thon, where people came together across 22nd–23rd September to collectively take on our 3,300-mile challenge. 👟💙

Thank you to everyone who has been part of the journey so far!

11/10/2026

09/10/2026

Mirad lo que nos ha mandado Kathleen, una de las representantes de pacientes en enfermedades raras que participaron en el Science in Spain de The Marfan Foundation . 👀

¿Veis esos folletos encima de la mesa? ¡Son los nuestros! Y Kathleen nos contó que gracias a uno de ellos descubrió que existían ACTA2 Alliance , ACTA2 Alliance UK y Qué Pupilas Más Grandes Tienes y aprendió más sobre ACTA2.

Así que… BINGO. Eran justo para eso.

Porque, a ver, los médicos que estaban en Barcelona no necesitaban que llegáramos nosotros a explicarles lo que es una disfunción del músculo liso. 😂 Muchos saben muchísimo y seguramente ya se han cruzado con ACTA2 en algún artículo o incluso con alguna familia.

Nosotros queríamos otra cosa: levantar la mano y decir “¡eh, estamos aquí!” 👋

Para que, si mañana aparece delante de ellos otra familia con ACTA2 o MSMDS, sepan que hay gente al otro lado. Familias, asociaciones y médicos con los que hablar. Que nadie tenga que empezar desde cero y a lo loco.

Y allí estaban, por ejemplo, la Dra. Dianna Milewicz, cuyo equipo describió el MSMDS en 2010, y el Dr. Mark Lindsay, que trabaja en terapia génica para MSMDS y que además es mi cardiólogo cuando voy a Boston a participar en investigación. Majísimo él, que también nos mencionó en su ponencia.

¿Sabéis quién no estaba? Yo. LOL

A mí me tocó quedarme en casa preparando los proyectos que tenemos que acabar antes de que nos den las uvas. Literal. 🎄😅

Y esperando que alguna familia más nos haya encontrado para entonces. Porque cada una trae otra piececita del puzle y quizá entre todos consigamos averiguar cómo narices mantener a este gen ACTA2 a raya. ¡Cuánto antes, mejor!

Que yo tengo bastante interés en que eso vaya rapidito… a ver si puedo librarme de esa dichosa operación de corazón de la adolescencia. Sinceramente, tengo mejores planes para entonces. 💃

Gracias, Kathleen, por la foto, por contarnos cómo nos encontraste y por recordarnos exactamente para qué mandamos cada uno de esos folletos. 😊

¡Hasta la próxima!

Pupilota💜

09/10/2026

A little look back at the Move-a-Thon. 👟

Our Move-a-Thon brought together people from across the country, all working towards the same goal: raising awareness and vital funds for ACTA2 research.

At Resolution Interiors, the team got involved with treadmill runs, bikes, rowing, cross trainers and a packed schedule of classes.

But it wasn’t just happening there.

People across the country were getting their miles in in their own way - running, walking, cycling, dancing, taking part in fitness classes and finding all sorts of creative ways to contribute.

Firstly, a huge thank you to Boon Brown for being our Gold Sponsor and completing over 500 miles, and to Statement Property Group for sponsoring us and keeping everyone fuelled at the hub with yummy burgers!

Birdland Park and Gardens took on their own challenge in a very memorable penguin suit, completing 25,642 steps, while Leweston Prep & Senior completed 245 miles and Huish Prep got involved through their PE lessons.

Cross Fit Bath topped the leaderboard with almost 1,500 miles in just one day, while Bamfords moved almost 300 miles and Communifit got involved in some brilliant ways, including Boxercise.

Thank you to Resolution Interiors for hosting our hub, Service Gym for providing the equipment, NatWest for their walks and bike ride, and Girls Run Club Yeovil for joining us for a 6am run club.

And of course, thank you to Cadbury Outlet Shops, Mark One Consultants, Abbey Manor Group and Studley Roofing for supporting us as sponsors, and to everyone else who took part across the country. 💙

07/10/2026

MSMDS doesn’t always look how you might think.

When you hear about a rare genetic condition, it can be easy to picture someone who looks visibly unwell or whose condition is immediately obvious. But that isn’t always the reality for children like Lily.

ACTA2-related MSMDS can affect multiple systems throughout the body, and some of the things Lily lives with aren’t things you would necessarily notice just by looking at her.

She can be cheeky, energetic, curious, independent and completely absorbed in whatever she’s doing. She can run around, laugh, play and have the kind of days where you’d never know there was anything different about her.

That’s why we will continue to talk about MSMDS, sharing Lily’s story and supporting research - so that more people understand this condition and, ultimately, so families like ours can have more answers for the future. 💜

02/10/2026

We are so grateful that we’re able to take Lily on holiday and make these memories together. 💜☀️

For most families, booking a holiday is something you look forward to for months. For us, there’s an extra layer of gratitude that can be difficult to put into words.

Lily lives with ACTA2-related MSMDS, a rare and progressive genetic condition that can affect multiple systems in the body. We’re very lucky that, right now, Lily is well enough for us to be able to take her away, explore somewhere new and enjoy a holiday together.

We never take that for granted.

More than anything, we want Lily’s childhood to be filled with happy memories, new experiences, adventures and lots of moments where she can just be a little girl.