What's new?

IT'S THAT TIME OF THE YEAR AGAIN... Full of festive fun and cheer, and we'd all hope for 'peace and goodwill'. While it's a time for making memories, it's also a time for understanding that some people may not be relishing all the celebrations.

So, if this time of the year isn't all it's cracked up to be for you, we still send you our kindest thoughts and best wishes - not just for the next week or so, but for the longer term too.

Some of us are due to have a white blanket of snow... and while you're out there making your snowman with wet gloves and freezing hands, just remember that's loads of us who would willingly swap with you just to see a sprinkling of that beautiful white stuff without having to stand under a snow machine!

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IF YOU HAVEN'T ALREADY CHECKED IT OUT... We have the full opening presentation from Thomas Nixon (Ophthalmology Consultant and Research Associate at Addenbrooke's Hospital and University of Cambridge) at the 2024 Conference.

This is a solid overview of Stickler Syndrome and its numerous sub-types, putting a wider perspective on the the variables around diagnosis. Well worth a listen for the informed and the unaware alike.
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Thomas Nixon (2024 Conference)
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Clink on the link, above, or the YouTube icon at the top-right of our website pages to view our current video clips (this includes the presentation from Matt Fell and a conference overview video).

More is on the way, so keep a close watch on our social media pages and this web page (you can also sign up for the 'Briefs' newsletter here).

If you have a YouTube account, please don't forget to subscribe while you're in there - this all goes to help in the future as we build up numbers.

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Watch out for upcoming charity surveys... as we start to help out with leading research projects around Stickler Syndrome testing and diagnosis. We need the numbers in response for the research to be effective, so please come forward when we post the surveys and give us your feedback (this will all be going to medical professionals who are working hard across the Stickler Syndrome symptoms to provide more information, swifter testing and diagnosis, and earlier preventative treatments).

Be part of this with us!
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And let's not give up on Give as you Live. Well done to all of you who have signed up recently, we've seen some FREE DONATIONS starting to come in from over 6,000 contributing online retailers.

This is a great way to donate to a charity (or multiple charities) of your choice without it costing you anything... maybe just an extra little click on your browsing.
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Step 1 - Sign-up at www.giveasyoulive.com/how-it-works
Step 2 - Choose your charity/charities to support
Step 3 - Share with your friends and see how many you can get to join you in this great initiative.

And if you've signed up previously and not really used it, how about having another go at the link above (there's a Help button at the bottom of their web page if things aren't clear). Our top subscriber in the past 12 months has raised £89.

This is great for business purchases too, especially where the seemingly small percentages can amount to larger donations.‍‍