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More video clips will be going up on our YouTube channel... the latest is Thomas Nixon's opening presentation at the 2024 Conference, so this content is now being shared to a much wider audience.
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). This is followed in February 2025 with 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 is keeping content refreshed, and our November edition of 'Briefs' went out to over 170 subscribers. Subscribe now on the About page of this website to get access to new content, offers and monthly 'sur'prizes. The team is also about to start looking at surveys for research purposes, so please do be open to taking part when this arises in the New Year.
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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