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Next steps

  • Thanks to everyone who took part in the Virtual Appointments survey shared in the newsletter, this website, and across social media. We'll be carrying out a few more in the future, which we ask that you get involved with. These will help us receive important feedback on priority objectives for the coming year, and also provide important data for ongoing research projects.
  • In case you hadn't already noticed, we have a full 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, followed by a 10k DeeJay run in Turin.

    There's Inflatable Fun Runs all over the UK with short 2.5k distances for the kids and families to enjoy together. One of our trustees will be joining in at Brands Hatch in May, so come and enjoy the fun on the day.

    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 some cases the charity will pay the registration fees for the events and set fundraising targets with you that don't put you under pressure.
  • 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.