Susanne Driffield (@s_driffield) header
Susanne Driffield (@s_driffield) profile picture

Mum to my DMD superhero Joe. All views are my own.

Ayr, Scotland
Joined July 2013
Photo by Susanne Driffield (@s_driffield)Photo by Susanne Driffield (@s_driffield)Photo by Susanne Driffield (@s_driffield)Photo by Susanne Driffield (@s_driffield)Photo by Susanne Driffield (@s_driffield)Photo by Susanne Driffield (@s_driffield)Photo by Susanne Driffield (@s_driffield)Photo by Susanne Driffield (@s_driffield)Photo by Susanne Driffield (@s_driffield)Photo by Susanne Driffield (@s_driffield)
We wrote to the Health Secretary @neilcgray some 2 weeks ago pleading on behalf of these young boys for a drug that will give them some quality of life, before it is too late- We were ignored, it is beyond cruelty to ignore these children, when the drug is available @ScotGovFM
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Susanne Driffield retweeted
🧵Over half of people with muscle wasting and weakening conditions receive Personal Independence Payments (PIP). It's a lifeline. 1/7
The Work and Pensions Secretary Liz Kendall has outlined radical changes to the benefits system to get more people into work and cut spending. "Millions of people who could work [are] trapped on benefits", Kendall told MPs in the House of Commons itv.com/news/2025-03-18/majo…
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🗣️ Have your say! Help shape our 10-year vision to transform the lives of people with muscle wasting and weakening conditions 🌍. 📋 Take our short survey and share your views: loom.ly/F45mAwg ⏳ Closes Monday, 17 February. #HaveYourSay
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"The social care system is broken", says Graham. He lives with MD and his social care was reduced last year. This story shows the devastating reality of social care cuts — leaving people feeling invisible and unsupported. This isn't just numbers on a budget - it's lives.
🗣️ "The social care system is broken." @NickMartinSKY meets a couple who are dealing with the fallout of that system ⬇️

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Looking for support? 🧡 Our Muscle Groups connect people living with muscle wasting or weakening conditions. Find one near you. These groups offer a supportive space to connect, share experiences & meet others who understand your journey. Read more: loom.ly/vLTI_YM
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Susanne Driffield retweeted
We’re delighted that @NICEComms has recommended vamorolone (Agamree) for people aged four and over with Duchenne muscular dystrophy in England. 👏 1/5
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🚨 Your donation has double the power this week! Every £ you donate will be doubled by our donors. Over 110,000 people in the UK live with muscle wasting conditions. It can be exhausting and lonely. Make a difference: loom.ly/yCGAwVE #GivingTuesday
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Susanne Driffield retweeted
🚨NEWS🚨 Government to consider increasing £30k limit for Disabled Facilities Grant following a claim for judicial review from a 6-year-old Disabled child and his family irwinmitchell.com/news-and-i…
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Last week, an incredible team of 15 adventurers scaled Mount Kilimanjaro, raising £86,078 (incl. £11,597 in GiftAid)! ⛰️ These funds will enable groundbreaking research to support our community affected by muscle wasting conditions.💪 Huge thanks to all involved!
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💛 A Town supporter from an early age, Zak now works as a Matchday Facilities Assistant at the club The role is supported by @disactyork with Zak now making a significant contribution to the club week in week out 👏
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Paul is climbing Mount Kilimanjaro this weekend for his son Frankie, who lives with myotonic dystrophy. He'll be joined by 14 fellow adventurers on the challenge, including his friend Dan Cooper. Together, they've already raised an impressive £11,000! 🎉 loom.ly/K5MB2fI
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Jon Richardson support for 'remarkable' fundraiser bbc.in/4dDTebU
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This #LimbGirdleAwarenessDay, Zoe shares her top tips for managing life with the condition: 🎙 Check out her new podcast, Dystrophy Diaries, where she talks all things LGMD – from relationships to mobility aids. Got questions? Drop them below! ⬇️ #LGMD #MuscularDystrophy
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Did you know accessible businesses can tap into a growing market of disabled tourists and travellers? Learn more and sign our #THINKACCESS pledge: disabilityactionyorkshire.or… Let’s work together to create a more inclusive environment! #AccessibilityMatters #HarrogateDistrict
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Millions of us were left disappointed by the Oasis ticket sale this weekend. But this is nothing new for disabled gig-goers. Disabled fans are routinely let down by the live music industry 🎸 lbc.co.uk/news/disabled-peop…
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We are delighted to announce that @MDUK_News recently awarded funding for projects at our centre in the recent 2024 grant round! To find out more: @ChronicleLive: bit.ly/4g4kxP1 MDUK: bit.ly/47drbic
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Shocked by the lack of courtroom accessibility, trainee barrister Konstantina (@WigOnWheels), living with Ullrich MD, founded Bringing [Dis]Ability to the Bar (@BDABarOrg). 🎓 She wants to improve access for disabled aspiring barristers. Read more: loom.ly/zDrA66Q
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A step forward to finding better treatments faster 🔬 The @jwmdrc is upgrading patient registries to a new, user-friendly platform by @UniOfNewcastle! Thanks to donations from companies, this will improve data collection, speed up research, and help find better treatments.
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Our president, @GabbyLogan, has been hard at work over the past two weeks, bringing the excitement of the Olympic Games to viewers. But she's never too far from supporting our mission - watch as she teams up with her sports stars to remind everyone that our #MusclesMatter.
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10-year-old Carmela empowers other young children just like her with her fashion-forward fundraising for @MDUK_News ❤️ She's now up for a JustGiving Award 🏆 Vote for your favourite fundraisers now ➡️ Just.ly/Vote | #GoCardless #JGAwards
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