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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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.
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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Great win for @Wrexham_AFC today. Here we are featuring 'On the Ropes' in their documentary Welcome to Wrexham. It's a special place for us as we did our first live radio show with Janice Long on BBC Radio Wales, next door to the racecourse ground.
Can we come play @VancityReynolds?
#WrexhamAFC
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Today marks the beginning of Neurodiversity Celebration Week – supporting acceptance for neurodiversity and equality. Our amazing @CoopRepresent network has a great week planned @coopuk 💙 Please take some time to read more: neurodiversityweek.com
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Just had our first incredibly generous and amazing raffle prize donated …. And it involves a Michelin Star ⭐️! Email us at [email protected] for tickets x
Keep Sam Smiling retweeted
A massive thank you to Leeds Musical Theatre Choir for raising an amazing £1085 for us by raffling a yearly membership to their choir. The fundraiser was inspired by 14-year-old Sam who MPS IVA Morquio. His mum Katy Brown is a choir member & one of our valued trustees.
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We are looking for a committed, enthusiastic person to lead the governing body of the MPS Society. Join our high-performing team of dedicated people who all share the same commitment towards our incredible community. Click here if this sounds like you: buff.ly/3f6SOjx.
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It's International #MPSAwareness Day. Every year on 15 May we come together to raise awareness across the world for all those living with MPS diseases. Show your support with a selfie 🤳👍 #ChaseTheSigns #MPSDay
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It's the 10th anniversary of our Wear it Blue campaign so we're expecting big things from you! Schools and community groups across the country will be joining in with Wear it Blue today. Show us your blue side for #MPSAwareness 💙 💙 💙
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We're delighted to share our video showcasing the origins of the MPS Society and our work over the past 40 years. Thank you to all involved with making it @DesignScienceUK and Shine a Light Productions. youtu.be/A2YH0_b9i2M
Keep Sam Smiling retweeted
@bluemangroup we’re turning social blue to raise awareness for @MPSSocietyUK as part of our #WearItBlue campaign. Can I get a retweet? 💙💙💙
Keep Sam Smiling retweeted
This year for #MPSAwarenessWeek, we are looking at #chasingthesigns of MPS and raising awareness of the disease. Today we have one of our lovely members Sam Brown who was diagnosed with MPS IVA Morquio when he was 17 months old. Read Sam’s story here: buff.ly/3FAFr6D.
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Fantastic day celebrating 40 years of the @MPSSocietyUK Really appreciate @Jeremy_Hunt for hosting and speaking so well about the work of the society and how it impacted on him. Fantastic job done by Sam cutting the cake!
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Before I was an MP I met Bob & Claire Stevens in Farnham - they broke my heart telling me about their struggle to get treatment for their 3 and 5 year old boys Sam and Oliver who have Hunters Syndrome. I worked with them after getting elected and Sam and Oliver are doing well +
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The day is finally here! It's the start of #MPSAwarenessWeek. Take a look at where the MPS Society are going today. We’re heading to London, to the @HouseofCommons to celebrate our 40th year! Check out our social media channels to see what we get up to. #MPSAwarenessWeek
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Thank you @Jeremy_Hunt for your lovely words about MPS Society and for your continued support. We appreciate all that you do for our charity and thank you for the well wishes. We had an amazing time today.🙂
Bob became CEO of the @MPSSocietyUK which campaigns for many similar families. Congratulations on 40 years of remarkable campaigning!
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I love this @Ellen69525941 🥰Thanks for sharing! @CoopRepresent
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Keep Sam Smiling retweeted
Great to be able to share some positive news with you @BBCLookNorth tonight- After a decade of fighting, the life changing drug that’s helped Sam with Morquio syndrome has finally been approved by the NHS. We’re proud to have been able to share his story over the years.
