Every Move Matters: How Our First Move-a-thon Brought Communities Together for ACTA2
From school playgrounds to running tracks, gyms to living rooms, our incredible community came together to move for a cause that matters. And what we achieved was beyond anything we could have imagined.
A weekend of movement, hope and community
On 22–23 September 2026, ACTA2 Alliance UK hosted our first-ever Move-a-thon: Every Move Matters, a nationwide fundraising challenge bringing people together to raise awareness and vital funds for ACTA2-related conditions, including Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS).
Our mission was simple: get moving, raise awareness and help accelerate research into potential treatments for this ultra-rare genetic condition.
We set ourselves an ambitious challenge: to collectively travel 3,300 miles - the approximate distance from Bath, UK, to Boston, USA, connecting our home in the UK with the city at the heart of pioneering MSMDS research.
We invited everyone to take part, regardless of age, ability or fitness level. Whether walking, running, cycling, swimming, dancing or simply getting their steps in, every movement counted.
And our community certainly delivered.
7,000+
Collective miles achieved
£29,288
Raised through the Move-a-thon
2 days
Of incredible community activity
2×
Our original mileage target, and more
We didn't just reach our target. We smashed it.
What started as a challenge to travel 3,300 miles quickly became something extraordinary.
By the end of the event, participants had collectively travelled more than 6,600 miles, doubling our original target. And as the final distances continued to come in, our total climbed beyond 7,000 miles.
But the greatest achievement wasn't the distance.
Together, our supporters raised an incredible £29,288 for ACTA2 Alliance UK. For a charity founded only months earlier, this was a truly remarkable milestone and a powerful demonstration of what can happen when people come together with a shared purpose.
Every mile represented someone choosing to make a difference. Every donation brought us closer to funding research. And every conversation helped raise awareness of a condition that far too few people have heard of.
From Bath to Boston, and everywhere in between
One of the most special parts of the Move-a-thon was seeing the different ways people got involved.
Schools organised activities, gyms rallied their members, running clubs clocked up incredible distances, and families took on their own challenges.
Some of the standout contributions included:
CrossFit Bath, whose incredible community contributed approximately 1,500 miles.
BoonBrown, our Gold Sponsor, who collectively completed more than 500 miles.
Leweston School and Huish Primary School, whose pupils contributed a fantastic 245 miles.
Heaton Harriers, who took on an impressive 12-hour running challenge.
Birdland, where even a penguin joined the movement, recording 25,642 steps!
The Bamfords, who contributed approximately 300 miles.
From little legs taking their first steps to seasoned athletes pushing themselves further, every contribution mattered.
It was a reminder that fundraising doesn't have to be about running marathons or breaking records. Sometimes the smallest movements can help make the biggest difference.
Our Move-a-thon hub in Yeovil
At the heart of the weekend was our Move-a-thon hub, kindly hosted by Resolution Interiors in Yeovil.
The hub brought together supporters, volunteers and businesses, creating a central space to celebrate the challenge and encourage everyone taking part across the country.
With equipment provided by Service Gym, catering support from Statement Property Group and a virtual connection for those joining remotely, the weekend became a celebration of community spirit.
We were also incredibly grateful for the support of Communifit, NatWest, Girls Run Club Yeovil and the many other organisations and individuals who helped make the event possible.
What made the Move-a-thon so special was that people didn't need to be physically together to feel part of something bigger. Across the UK, everyone was moving towards the same goal.
More than just a fundraiser
When we launched ACTA2 Alliance UK, one of our biggest hopes was to build a community where families affected by ACTA2 would never feel alone.
The Move-a-thon showed us just how powerful that community could become. People who had never heard of ACTA2 before were asking questions, sharing our story and getting involved.
Businesses offered their time, resources and expertise. Schools helped children understand the importance of supporting others. Friends, families and complete strangers came together to champion a cause that means so much to us. For an ultra-rare condition, awareness is everything.
The more people who understand ACTA2, the greater our opportunity to improve recognition, support families and build momentum behind research.
Thank you for making every move matter
To every person who walked, ran, cycled, swam, danced, donated, volunteered, sponsored or shared our challenge: thank you.
To the businesses, schools, clubs and organisations who rallied their communities: thank you for believing in our mission.
And to everyone who helped us exceed our expectations, you have shown us what is possible when people come together for something bigger than themselves.
We started the Move-a-thon with a target of 3,300 miles.
We finished with more than 7,000 miles, £29,288 raised and a community stronger than ever.
Every move mattered. Every person made a difference. And together, we're helping move ACTA2 research forward.
The Move-a-thon may be over, but our mission is only just beginning.
With love and gratitude,
The ACTA2 Alliance UK Team
Help us keep moving research forward
Your support helps ACTA2 Alliance UK fund vital research, raise awareness and connect families affected by ACTA2-related conditions. Whether you make a donation, organise your own fundraiser or simply share our story, you can help us build a brighter future for those living with ACTA2.
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