What's new?

ONLY 1 WEEK TO GO... until Sandro, from Italy, runs the Mitja Marato in Barcelona.
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This lovely family decided that the key research into Stickler Syndrome was here in the UK, so their active Just Giving page has managed, so far, to fundraise over £1500, mostly from their local connections. That same page has their Family's Story about coming up against Stickler Syndrome in Italy, and why the decision was made to back the UK research programme.

Sandro is pictured here with a drawing featuring our 'Trickles' community character. This masterpiece was given to him by his daughter, Stella, who we had the pleasure of meeting at the September '24 Conference in Cambridge.

Every tiny donation has the potential to make a difference to improving pathways to earlier diagnosis and preventative treatments, and edges Sandro closer to his £2000 fundraising target.

Not everyone is in a place to help Sandro hit that target, but if we can share this story and the link, we might help him to reach it by the event date of February 16. The charity extends a massive "Thank you" to Sandro, his family, and all the supporters who have backed him.

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OUR FIRST CHARITY SURVEY... as patient numbers increase with better awareness, the Stickler Syndrome Highly Specialised Service at Addenbrooke's CUH is looking into how they might best use 'Virtual Appointments' for those who may not necessarily need a 'face-to-face' appointment every time. If you a registered with the service at Addenbrooke's (or intend to be), please do take part in the short survey so that this can be properly evaluated and people's opinions taken into consideration. The survey link is open now: Addenbrooke's Virtual Appointment Survey Thank you.

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COMING UP OVER THE NEXT 2 MONTHS... we'll be featuring and supporting our amazing team of 2025 London Marathon runners. The charity has relied on sponsorship through this event's entries as its principal source of income for several years.

We'll be reaching out to the runners and encouraging as many people as possible to share the posts and promotions within their work and leisure environments.

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OUR YOU TUBE CHANNEL... is hosting a number of presentations from the 2024 Conference in Cambridge so that the information can be shared to a wider audience.

The latest one is from Robert Smyth who will be researching the possibilities of earlier pathways to diagnosis of Stickler Syndrome, looking deeper into children who were diagnosed with Perthes Disease. This is a valuable 14-minute talk on how this research can really help children to get an earlier diagnosis and receive the support they deserve going forward.

Robert Smyth (2024 Conference)

Stickler Syndrome UK will be carrying out a survey across the UK and EIRE to bring together essential data for this research to be as effective as possible. Taking part in this research is an active contribution towards helping with earlier diagnosis of Stickler Syndrome.

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EVERYONE CLOSE TO EAST ANGLIA... who's up for a 2.5k Inflatables fun run at Trinity Park, Ipswich on 5th April (details on our Events page). This could be a great 'get-together' for children and families with some brilliant photo opportunities. It's what we subscribed to the 'Run For Charity' events for... getting people together. If you're interested in taking part, just drop an email to contact@stickler.org.uk and we'll start to look at the numbers.
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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 14 months has raised £108.

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