Just under 30 adults and children took part in the 2025 10th Anniversary of 'Santa in the City' in the shadow of St Paul's Cathedral, London on Wednesday, 3 December. With and without Stickler syndrome they donned their Yellow Santa hats and took to the course across the river 4 times and back to Paternoster Square.

Boosting awareness

This was all about boosting the awareness of this life-changing condition and helping to get faster pathways to diagnosis. It's not that our medical professionals are negligent, it's just so elusive that it really needs them to think about 'Joining the dots' between the variables of the symptoms.

Our wonderful NHS provides free funding for referrals and diagnosis in England, and by commissioning across the UK. This is to be celebrated because they're saving children from unnecessarily losing sight in one or both eyes by getting that diagnosis and treatment before the damage has been done.

What is Stickler Syndrome?

Stickler Syndrome affects sight (that's blindness to be blunt), hearing and balance, palate (eating, drinking, speech) and other oro-facial symptoms, and musculoskeletal (joints, bones and early-onset arthritis) through changes in different types of collagen – all this from birth (but to varying degrees and in very different combinations).

Our ongoing ‘Join the dots’ campaign is due to start from early 2026 with the purpose of providing medical professionals how they can 'Join the dots' and get the wheels in motion. We’ll also guide them through those key questions that go beyond treating a single symptom and lead them to making that referral for testing and diagnosis.

Why?

• Because after over 20 years of having preventative treatment available in the UK, children and adults are still presenting at the Stickler Clinic with life-changing blindness in one or both eyes due to retinal detachments.

• Because patients come to the Stickler Clinic after damage has already been done due to lack of understanding and awareness (i.e., unsuccessful and damaging sight corrections).

• And because once diagnosed on examination, detailed DNA testing and checking of other symptoms can identify the ‘types’ of Stickler Syndrome and the most likely risk factors and support plans for an individual patient.

How you can help

Stickler Syndrome is classified as a ‘rare condition’ but the reality is that a lot more people are living with it without diagnosis and recognition of their symptoms.

Any donations, however large or small, towards the cause can help us to make a massive difference. We’re such a small charity with volunteer resources but we know that what we’re doing can help to save sight and improve people’s lives for the longer term.

We’ll use funds to help create better, wider awareness all over the UK; to help provide support and information to people and families with the condition; and to work closely with specialists to advance research and treatments across all recognised symptoms.