I’m Katy, mum to Sam aged 14 who has Morquio Syndrome, we’ve successfully campaigned to ensure the first ever treatment called Vimizim is funded by the NHS.

Otley, West Yorkshire, UK
Joined November 2014
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Sponsorship opportunity ❤️. Charity Ball for @MPSSocietyUK in Harrogate on 7th Oct. Do you run a small business or know someone who does, who might sponsor a table for £20? We’ll thank & acknowledge you & share leaflets / business cards on the night. Thank you x x
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Last 4 weeks of ticket sales! Please help us with a final push! We’ve an incredible evening planned. From walk around magician to surprise entertainment, from Photo Booth to 1980s style video games, disco, dancing, 3 course meal and fizz, as well as raffle and silent auction 🙏
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💙💙💙💙💙. Come and support us and the wonderful @MPSSocietyUK x x
Get dressed up for a night to remember at Katy Brown’s MPS Charity Ball at the Crown Hotel, Harrogate to raise money for the MPS Society. It promises to be a wonderful event & we are so grateful for the family’s support. Email [email protected] for tickets. 💙
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Replying to @VancityReynolds
@VancityReynolds @RMcElhenney our son Sam has Morquio, a v rare genetic condition. We’re organising a charity ball for @MPSSocietyUK. We’re not Wrexham fans (sorry) but Barnsley so get the grass roots ecstasy & agony & ❤️ what you’re doing. Might you donate an auction prize? 🙏x
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Replying to @ZoeTheBall
@ZoeTheBall @sarajcox @vernonkay @Rylan can you help my family and this event by retweeting to spread the word? This wonderful charity is a lifeline to us and many others across the UK 🙏
Pls retweet & help us to publicise our family organised event to raise money for a wonderful small charity. You may not have heard of @MPSSocietyUK, unless you’re affected by MPS & related diseases. But they’re a lifeline if you are. Tickets available at [email protected]
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Pls retweet & help us to publicise our family organised event to raise money for a wonderful small charity. You may not have heard of @MPSSocietyUK, unless you’re affected by MPS & related diseases. But they’re a lifeline if you are. Tickets available at [email protected]
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4 months tomorrow it will be party time! Don’t miss out, get your tickets now by emailing us at [email protected] 💙. Really appreciate everyone’s support xx
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MPS diagnoses are often delayed as symptoms & severity vary, & many specialists either aren’t aware of MPS or aren’t able to piece symptoms together. The @IMPSN’s mission is to speed up identification of key MPS symptoms & raise awareness of the urgency of reaching a diagnosis.
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MPS Awareness Day 2023 . Super proud of Sam & the amazing young man he is becoming ❤️. I’m emotionally all over the place with MPS at the moment as things are not easy so I’m going to go less for words & more for this👇. Doing all we can to increase MPS Awareness. Pls support x
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Come and join us 🙏❤️
One of our lovely Trustees, Katy Brown is holding a Charity Ball on Sat 7 October in the Crown Hotel, Harrogate to raise money for the MPS Society. It promises to be a wonderful event & we are so grateful for the family’s support. Email [email protected] for tickets.
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Our family is working so hard to make this ball a huge success but to create real impact, we need the kindness and generosity of others. Can you or someone you know help us with raffle prizes, sponsorship or even a celeb connection? 🙏❤️🙏 Always grateful and always hopeful x
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Replying to @sarajcox
@sarajcox our family are organising a ball in Oct to raise money for a fab cause close to my ❤️. MPS diseases are rare genetic conditions, our son Sam has one. I’d love to find someone exciting / more interesting than me to join us & draw the raffle. Could R2 friends help? 🙏 x
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Organising a ball as a family is really hard work but lots of fun too! Can you help us spread the word? The more tickets we sell, the more successful it is & the more we raise for @MPSSocietyUK Pls retweet & email [email protected] for tickets x x youtu.be/zb3sFMsgAOk
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Keep Sam Smiling retweeted
It’s Deaf Awareness Week, focussing on inclusion of 12m UK adults who are deaf or have hearing loss. In partnership with our @CoopRepresent network, our deaf colleagues hosted a Q&A and an intro to BSL. We are proud to support our deaf colleagues in their careers @coopuk 💙
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Replying to @skoshyork
@skoshyork thank you so much for another incredible lunch yesterday (the blood orange tart - wow!) and thank you too for donating a raffle prize to support our charity ball to raise money for @MPSSocietyUK - it means the world to us x x
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Replying to @sarajcox
My grandma said my hair looked like straw. She insisted she meant the colour and not the texture 😂
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Hi Sara - amazing :) and funny you mention Harrogate, I’d sent you an email via your website hoping you might be able to support us with a charity ball we’re organising, in Harrogate in Oct 🙏 See below a video we made with the kids x youtu.be/zb3sFMsgAOk
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Please watch and share our video 😊 and come and join us for a brilliant night to raise money for a wonderful charity @MPSSocietyUK x x youtu.be/zb3sFMsgAOk
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Please watch and share our video and come and join us to raise money for @MPSSocietyUK x x youtu.be/zb3sFMsgAOk
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