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Pamela's fundraiser for Stickler Syndrome UK

Pamela House is raising money for Stickler Syndrome UK

Colchester Stampede 10k · 17 May 2026 · Start fundraising for this event

Stickler Syndrome UK aims to raise awareness of Stickler syndrome amongst the medical profession; promote the value of early diagnosis and help preserve vision, hearing and mobility (particularly the prevention of sight loss in children and adults).

Story

Thanks for visiting my page! This year, I’m taking on the Colchester Zoo 10K Stampede to raise vital funds and awareness for Stickler Syndrome UK.

For a long time, I felt like I was simply "falling apart." I grew up with severe short-sightedness, needed hearing aids in my teens, and was diagnosed with Osteoarthritis in my 30s. It wasn't until my 40s that the puzzle pieces finally clicked: I had Stickler Syndrome.

Stickler Syndrome is a rare genetic and degenerative disorder affecting the connective tissue. It can cause retinal detachment, hearing loss, and early-onset arthritis. It affects roughly 1 in 8,000 people, but because it’s rare, many families go years without answers.

Getting my diagnosis changed everything. It helped me understand not just my own health, but the future of my children, two of whom also have the condition and possibly my grandchildren.

I am incredibly lucky to be under the care of the specialist team at Addenbrookes Hospital. Their research and dedication are world-class. This challenge will be to support Stickler Syndrome UK, a charity founded by the late Wendy Hughes to ensure no family has to navigate this diagnosis alone.

Because of my Stickler Syndrome, I’m now registered Deafblind. I’d usually have my Guide Dog, Pammie at my side, but I think this event might be a bit much for her! So, I’ve asked my wonderful Communicator-Guide, Anna, to step in and help me out on the day. So please wish us both luck in completing this challenge together.

Every penny raised helps fund research and support for families like mine. Thank you for your support—it means the world to me (and my knees!).

Pam xx

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Donation summary

Total
£303.98
+ £10.00 Gift Aid
Online
£303.98
Offline
£0.00

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