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Next steps

The first survey is underway, but more will follow and we really need you to get involved. Research relies on a reasonable amount of data collection. This is a big initiative for the charity this year as we try to support our medical professionals in improving the pathways to diagnosis and being able to research deeper.
In case you hadn't already noticed, we have a new Events page on the website. This is an exciting new initiative which opens up hundreds of inclusive events all around the UK for people to participate in or just meet up and support others. Following the success of Run Alton Towers and Santa in the City as a start in 2024 (raising nearly £2000), we saw Sandro Racca raise a further £2100 travelling from Italy to run the Barcelona Half-Marathon.

We've added more to our highlights... including a fun day out in May at Colchester Zoo for the Colchester Stampede. And if there's any keen road cyclists amongst our connections?... May 2025 sees the Etape Caledonia in the Scottish Highlands.

And we're about to add fun 'Inflatables' 2.5k runs, open to younger ages, and some 5k 'Tough Mudder' challenges for those who dare!

Check out the area cards on the events page to also see what's coming up in your area... it's a great opportunity to have fun and make connections - and in most cases the charity will pay the registration fees for the events.
Our social media volunteer team continues to be busy with social posts and if you haven't already subscribed to the charity Newsletter you can subscribe now on the About page of this website.
The pilot project has started at Addenbrooke's Hospital in Cambridge to help make children's visits for operations a more pleasant experience. We'll see how this goes before evaluating for extension to other areas.
Following the new Physiotherapy factsheet on the Downloads page, we now have the first two of the MSK factsheets. 'What is Stickler Syndrome' and 'Hypermobility' are now available for download. More are in progress and awaiting approval.

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