A summary of all the latest news from the charity...

OUR PRIORITIES SURVEY IS NOW LIVE... this is your opportunity to have a say in what the charity prioritises for the next 12 months.

Just a few minutes of your time scoring objectives, with an option for additional comments.

Please take up this opportunity and invite other family members to share their opinions too.

7 CHARITY SUPPORTERS took part in the Inflatables 2.5k at Brands Hatch on Saturday, 17 May.

They had some great fun on the obstacles (for ages 5+ years) with hundreds of spectators looking on from the sidelines. Food, drink, music, sunshine and laughter.

Highly recommended for their events across the UK this summer.
See our Events page for dates and locations.

Going again this July is Martin Snead from the Highly Specialised Stickler Syndrome Service at Addenbrooke's in Cambridge.

This time it's the Bantham Swoosh open water swim... so if you didn't get a chance to support him for last September's swim, here's the opportunity to leave a message of support.

This time he's being backed up by daughter, Charlotte, who will also be taking up the challenge of the 'swoosh'.

All donations are going towards a ring-fenced cause for further vitreoretinal research. Find out more here!

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Applications to run the 2026 London Marathon for Stickler Syndrome UK are still in the initial phase. These can be made through our the charity's long-term organisers for this event, CRunCH, but get in soon because confirmations tend to be made in early part of the summer, usually just after the public ballot results have been released.

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And if you're not already following the charity on Facebook or Instagram, and if you're not subscribed to our e-Newsletter 'Briefs' or our YouTube channel please try to help us get these numbers up to a level that will give us better opportunities to acquire funding and sponsorship for key projects to support the Stickler Syndrome community.

We've worked hard on the brand and visual identity but, as charities go, we're still a small fish in a very big pond. We have some really important challenges ahead for awareness, diagnosis, research and support - many of which are very worthy of sponsorship if we can realise a true reflection of the people and families connected with Stickler Syndrome.

All our social media links are at the top-right of the website pages and the sign-up for the e-Newsletter is on the right of this Home page.

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