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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. We've just completed Run Alton Towers and Santa in the City as a start in 2024 (raising nearly £2000). Coming up in February 2025 is Sandro travelling from Italy to run a Half-Marathon in Barcelona for Stickler Syndrome UK.

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 us?... May 2025 sees the Etape Caledonia in the Scottish Highlands, and the Tour of Pembrokeshire in Wales - everything from 25 to 105 miles.

And, just to mention, we have a 2.5k Inflatables fun run on the list in Ipswich - this can be something for all the family and a great opportunity to get lots of us together for a memorable day, especially with children and young people coming together for some laughs.

Check out the area cards on the events page to also see what's coming up in your area... why not do something similar elsewhere?
Our social media volunteer team will be kept busy as the 2025 London Marathon posts start to rerun and our surveys get underway. The laste edition of 'Briefs' went out to over 180 subscribers. 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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