Having safely made it to Dover following his 87 mile run from Marble Arch, Sam is now swimming the English Channel and will then jump on his bike at Calais for the 181 mile trip to Paris! You can read more about his incredible challenge for @MDUK_News here musculardystrophyuk.org/abou…
Susanne Driffield retweeted
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
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…
Susanne Driffield retweeted
🗣️ 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
Susanne Driffield retweeted
"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 ⬇️
Susanne Driffield retweeted
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

ALT "Graphic featuring a testimonial in bold text: 'I’ve learnt a great deal from those who attend the Muscle Group; for every problem somebody has, someone else usually has a helpful solution.' Beneath it, the attribution reads: 'Tony, East Midlands Muscle Group Chair since 2023' in orange text. The background has a teal wave-like pattern, with a white rectangular overlay containing the text."
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
Susanne Driffield retweeted
🚨 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
Susanne Driffield retweeted
Shane’s original lyrics for #fairytaleofnewyork
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…
Susanne Driffield retweeted
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!
Susanne Driffield retweeted
💛 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 👏
Last week these incredible people took on the challenge of a lifetime and trekked Kilimanjaro for @MDUK_News raising an incredible £86,000! Paul and Dan share their experience. I'm not crying, you are 🥲
Thank you @Cex ❤️
Susanne Driffield retweeted
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























