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We've managed to progress a number of projects since 2024 but now we need to make some decisions about the priorities going forward into 2025/26. This is where you come in... we'll be carrying out a survey during May and June to where you feel our main objectives are ranked in priority. Please do take part because your voice is so important in the charity spending money in the best possible areas to support people with Stickler Syndrome across the UK.
In case you hadn't already noticed, we have a full Eventspage on the website. This is an exciting initiative which opens up hundreds of inclusive events all around the UK, and overseas, for people to participate in (or just meet up and support others).
We'll be continuing to communicate about new events and new participants as members of the Stickler Syndrome community, across the UK, take part in fun runs and fundraisers to help the charity meet those prioritised objectives.
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. We're working on increasing the numbers of followers and subscribers, so please help us to achieve this so that we stand much more chance of securing sponsorship and funding... that way we can do so much more!
The pilot project continues at Addenbrooke's Hospital in Cambridge to help make children's visits for operations and procedures a more pleasant experience. We're now looking at extending this to other parts of the UK with Scotland in our sights first.
Plans are in progress to make a few updates to the website, so watch this space as we introduce some new features for 2025.
