Come and meet Trickles at ‘Santa in the City’ in London on Wednesday, 3 December. Whether you register to take part or just say “Hello, Ho, Ho” it would be great to see you as we take on the 4k fun ‘sort of run’ to help raise awareness of Stickler Syndrome.
You’ll find the full details and registration at stickler.org.uk/events. Once registered link to the group fundraiser page at justgiving.com/campaign/stic… and we’ll add you to the participants, then help us get to the fundraising target by signposting people to the page.
Can you help with current research into earlier-age diagnosis of Stickler Syndrome?
Does this criteria apply to one child in your family?
• Is aged between 4 and 10
• Has a diagnosis of Type 1 Stickler Syndrome
• Does not have another connective tissue or genetic diagnosis…
Can you spare a few minutes of your time to help us?
We have a survey about the priorities of the charity moving forward. Whilst we appreciate that all of the topics in the survey are important to people with Stickler Syndrome, we would like to know which ones matter the most.
Follow the link here to complete the survey:
s.surveyplanet.com/07qcmejk
Thank you for giving your time!
#sticklersyndromeuk
#survey
#youropinionmatters
Great fun was had at the Inflatable 5K in Brands Hatch today. Well done to all who took part.
#sticklersyndromeawareness
#inflatable5k
It's #NationalSiblingsDay2025 - We are joining @Sibs_uk to celebrate the siblings of disabled children and adults. Share your #ItsaSiblingThing stories, pictures & drawings and get involved sibs.org.uk/nsd
Today is National Siblings Day!
Let’s take some time to remember how much our siblings care for and support us within the Stickler community. We really do appreciate everything they do and today’s the day to recognise that.
We mustn’t forget that sometimes they need some support too and SibsUk is great at ensuring they are not overlooked.
#ItsaSiblingThing
#NationalSiblingsDay2025
Stickler Syndrome UK retweeted
Ever wondered how a braille watch works? ⌚️
📺 Brand new #TheRepairShop, 8pm on
BBC One and iPlayer.
Thank you to everyone who has signed up to ‘Give as you live’ in order to make these free donations to the charity possible.
#sticklersyndromeuk
#giveasyoulive
#freedonations
Wow…Sandro has caught the running bug! Today, he completed the DeeJay 10k in Torino raising yet more funds for Stickler Syndrome UK. Well done and thank you!
#sticklersyndromeawareness #fundraising #running #sticklersyndromeuk
‘Meet our Marathoners’ Monday:
Welcome to the first of our weekly introductions to the wonderful runners representing Stickler Syndrome UK in this year’s London Marathon. Read into their stories and get to know who you can cheer on from home.









