News update...

MORE RESEARCH DATA REQUIRED FOR DEVELOPMENT OF EARLY SCREENING TOOL...

‍We continue to seek families with a child between 4 and 10 years of age with Type 1 Stickler Syndrome?

If the child doesn't have another connective tissue or genetic diagnosis, or a previous diagnosis of Perthes disease, just 5 minutes of your time could really help with this important research to help get earlier pathways to diagnosis.

The Addenbrooke's CUH research team working with Dr Robert Smyth is looking into developing a screening tool to help identify young patients with a higher risk of retinal detachment and potential blindness. But sufficient data is always a critical part of any research so we need more people to come forward and help with this initiative.

What does it involve? Just send an email to contact@stickler.org.uk and we'll send you a Participation Info sheet and a link to the online survey. It's that simple and straightforward and all fully GDPR compliant.

Here's a bit of background with Dr Robert Smyth's presentation from the 2024 Conference.

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RESULTS OF THE RECENT SURVEY...

A massive "Thank you" to everyone who took part in the recent Stickler Syndrome UK survey on prioritising the charity's objectives. There was a great response and lots a really positive suggestions and feedback to digest.

The full details of the survey results appeared in the July 2025 edition of the charity's 'Briefs' e-Newsletter, so if you haven't already subscribed to 'Briefs' (on this page) keep a close watch on future editions and the social media channels as we start to turn those results into actions.

WHAT WERE THE TOP THREE SELECTED PRIORITIES?...

1. Raising awareness among the medical professionals and allied healthcare professionals across the UK to aid earliest diagnosis

2. Assisting with continued research across all symptoms

3. Wellbeing and mental health support for all ages ‍‍

OUR NEW AWARENESS CAMPAIGN 'JOIN THE DOTS' GOES INTO PILOT THIS MONTH...
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You'll start to see quite a few changes over the coming week as we begin to move into the pilot phase of the charity's 'Awareness' programme for 2026.

One of the first changes that you are likely to see is the format of the current website, but please bear with us while we start to build the content. The website is where the medical professionals will ultimately be signposted so we're starting off with this as our main channel of information and there's a fair bit of work to get done, all on a voluntary basis.

We'll also be working alongside the clinical team at Addenbrooke's to evaluate the initial ideas on reaching out to medical professionals with information about Stickler Syndrome, so the pilot programme will give us the opportunity to evaluate what works best.

And we'll start to collaborate with other organisations and charities to improve the general awareness, so you're going to be seeing and hearing a lot more exposure as we move into 2026.

There's still far too many children, young people, and adults presenting at the specialised Stickler Clinic for the first time having already experienced loss of vision in one or both eyes. If we can encourage our medical professionals around the UK to start thinking about 'Joining the dots' we have a good chance of avoiding this life-changing scenario for many patients.

How can you help? Simply by following, sharing, subscribing, engaging... wherever you see the charity let's keep the dialogue alive and kicking - ultimately it is going to increase our numbers and visibility and allow us to really start making a difference across a wide range of objectives.
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FANCY DRESSING UP IN A SUPPLIED SANTA SUIT THIS DECEMBER, ALONG WITH HUNDREDS OF OTHER 'SANTA IMPERSONATORS'?...

Well you can because on 3 December the charity will have a number of representatives who are registering to do the 'Santa in the City' 4k walk, or run, starting in the festive food and drink stalls of Paternoster Square.

Dressed in your recyclable Santa suit, you can join us on a festive route up the Embankment, over the Thames and along the South Bank before returning back over the footbridge to the square to collect your medal.

You can find out a whole load more at the official Santa in the City site and you can register for free either by emailing contact@stickler.org.uk or by going through the current Events page on this website.

If you'd sooner not participate, that's ok - you can just come along and join the in the fun, say "Hello" and cheer on those who've registered.

What's more, it's a family-fun festive evening event. The charity will be there from about 5.30pm until after the event and we'd love you to come along and join in the fun.

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