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Next steps

We've just put up Robert Smyth's Perthes Disease presentation from the 2024 Conference in Cambridge. Following this, the charity intends to help run a survey to get valuable input into the research aimed at developing a screening tool which links Perthes Disease with Stickler Syndrome. The outcome could potentially help towards earlier diagnosis of some Sticker Syndrome patients and allow them to have the option of preventative treatment for retinal detachment. Please do try to be part of this when we start the survey in January/February 2025.
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 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.
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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