Duchenne UK @DuchenneUK
Duchenne UK has one clear aim – to end Duchenne, a devastating muscle-wasting disease. We are the leading Duchenne muscular dystrophy charity in the UK. duchenneuk.org Joined October 2012-
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It’s with heavy hearts that we share this news from Pfizer. Investigations are ongoing and we will share any updates with the community.
Edgewise has announced the results from a 2-year trial of its drug Sevasemten in adults with Becker MD. While receiving the drug, the participants' NSAA scores stayed steady and even improved compared to declines seen in other studies. Find out more: investors.edgewisetx.com/news/news-deta…
Don't forget to give your views and help shape guidelines for physiotherapy in the UK! Parents and carers, take part in this short 10-20 minute survey by DMD Care UK: newcastle.onlinesurveys.ac.uk/parent-survey-…
We'd like to wish good luck to our Friends and Family Fund, Henry's Hills, who will be walking, cycling and running 100 miles along the Jurassic Coast this weekend, to raise money for Duchenne UK! If you would like to support them, you can donate here: justgiving.com/page/henrys-hi…
Shoutout to Simon Pittman who is taking part in the Dash AT HOME by cycling 600km on his exercise bike to raise money in honour of his son Jensen who has DMD. So far, he's raised £290! If you'd like to help Simon smash his target, you can donate here: yourselfwww.justgiving.com/page/simon-pit…
We’re offering a grant of up to £250,000 to fund projects that will be run as part of our DMD Care UK programme’s transition working group. You can find out more about the group and grant, and how to apply for it here. duchenneuk.org/new-grant-to-c…
Take part in the Dash AT HOME! Cover 300km - the distance our Dashers will be cycling during the London to Paris Dash - in any way you like! Walk, run, swim, cycle the distance and raise money for Duchenne UK. duchenneuk.org.uk/dashathome
Your April update has landed! 📬📧 Check your inbox for the Duchenne UK April newsletter featuring the latest news and updates, events and campaigns, ways to get involved and more. Missing out? Sign up for our monthly newsletter: duchenneuk.org/get-support/
Thank you to @dan_crossley who has been training hard for the Duchenne Dash - a 300km ride from London to Paris in under 24 hours to raise money for Duchenne UK and improve the lives of everyone with DMD. You can donate to Dan's fundraiser here: justgiving.com/page/dan-cross…
Thank you to @dan_crossley who has been training hard for the Duchenne Dash - a 300km ride from London to Paris in under 24 hours to raise money for Duchenne UK and improve the lives of everyone with DMD. You can donate to Dan's fundraiser here: justgiving.com/page/dan-cross…
Breaking news: Duchenne UK and Parent Project Muscular Dystrophy award $500,000 to paediatric neuromuscular neurologist Professor Peter Kang MD for research into new muscle cell treatment for DMD. Find out more here: duchenneuk.org/duchenne-uk-an…
We'll be hosting a webinar about our DMDhome study on the 7th May from 7-8pm via Zoom. It is an opportunity to better understand what the study involves, the benefits of taking part in the trial and to ask our team questions. Register your place here: us02web.zoom.us/j/87634147731?…
Shoutout to Paul and Lisa Vickers who are walking 300km in April for the Dash AT HOME! Paul and Lisa are taking on the challenge - walking the distance from London to Paris - in support of our family and friends fund, Mac My Day. justgiving.com/page/paul-vick…
We'd like to shoutout Ruth Brown who recently ran a 22km trail and raised over £500 for Duchenne UK! Ruth took on the challenge to support family and friends fund, Lucas Fighting Duchenne. Well done, Ruth! #EndDuchenne
We'd like to say a huge thank you and congratulations to our 5 amazing runners, April and Tim Brant-Coles, Jason Barton, Sam Oshaughnessy and Shaun Taylor who took on the London Marathon and raised £19,645! The ballot is now open for London Marathon 2025 letsdothis.com/gb/e/2025-tcs-…
Thank you and well done to Simon Coles who ran the Lincoln 10k for Duchenne UK! Simon ran the race in under an hour and raised £330! Fancy taking on a challenge for Duchenne UK? Check out our events and campaigns that you can get involved in: duchenneuk.org/fundraising-ev…
Hot off the press! Our founders, Emily Reuben and Alex Johnson, have been featured in the Spring edition of @rarerevolutionmagazine! The three-page spread delves into them receiving their OBEs, the work of Duchenne UK and how we were founded and more. bit.ly/WomenInRARE-Al…
April Brant-Coles will be on London Heart Radio tomorrow morning (Friday 12 April) at 6.30am to talk about running the London Marathon to raise money for Duchenne UK and in honour of her son Remi who was diagnosed with DMD last year. Tune in and show your support!
Help DMD Care UK improve physiotherapy and occupational therapy care by filling out this short online survey and sharing your experiences. The online survey takes 10-20 minutes. To take part, visit: newcastle.onlinesurveys.ac.uk/parent-survey-…
We want to say a huge well done and 'thank you' to the team at @Ikonic_Tech who raised over £13,000 by doing the Yorkshire Three-Peaks Challenge over the weekend! The team took on the 25-mile to support their Sales Director's son, 18-year-old Joey, who has DMD. Amazing work!
Calling all paediatric physiotherapists who have experience of working with boys with Duchenne Muscular Dystrophy following a femur fracture 📣 I am now recruiting for my MSc Advanced Practice dissertation research study. Please share with anyone who may be interested in helping.
Joining Jack @alljoinjack
63K Followers 2K Following We are joining Jack in the fight to find a cure for duchenne muscular dystrophy. Will you?
AnnemiekeAartsma-Rus @oligogirl
3K Followers 486 Following Translating science from bench to bedside and from jargon to lay language
Muscular Dystrophy UK @MDUK_News
18K Followers 3K Following We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
Saracens Rugby Club @Saracens
123K Followers 995 Following The official X account of Saracens Rugby Club. Join us as a Seasonal Member in 24/25! #YourSaracens💫
England Rugby @EnglandRugby
1.1M Followers 39K Following The official home of England Rugby on X. For the Red Roses 👉 @RedRosesRugby For community game updates 👉 @RFU
CureDuchenne @CureDuchenne
6K Followers 510 Following We are committed to improving the lives of those affected by Duchenne through accelerating research, improving care and empowering the community.
World Duchenne Organi.. @worldduchenne
3K Followers 1K Following Global organization to find a cure and viable treatment for those lives affected by dystrophinopathies: Duchenne and Becker Muscular Dystrophy. RT ≠ endorsement
Matthew S. Alexander @Matt_Muscle_Guy
5K Followers 4K Following Geneticist, Skeletal Muscle, Drug development, Gene therapies. Non-coding RNA, and Zebrafish Aficionado. All tweets are my own. Instagram @thealexanderlab
Jordi Díaz-Manera @querques2000
777 Followers 967 Following Professor of Neuromuscular Diseases at Newcastle University @jwmdrc. Passionate about clinical and basic research, but also about wine, sport, music and books.
JWMDRC @jwmdrc
1K Followers 501 Following John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University #dmd #sma #lgmd #fshd #dm1 #gne #col6 #cnm
TREAT-NMD @TREAT_NMD
4K Followers 565 Following Advancing diagnosis, care and treatment for those living with neuromuscular diseases around the world
WMS @WorldMuscleSoc
2K Followers 663 Following We invite you to the 28th International Annual Congress of the World Muscle Society in 2023. This is the premier annual Congress on #neuromuscular disorders.
Terri Ellsworth @TerriEllsworth
2K Followers 2K Following Duchenne Advocate/Rare Disease Activist Mom, Designing Mom-Creating awareness & advocating for approval of safe & effective drugs. Words are always my own.
Join Our Boys Trust @joinourboys
8K Followers 3K Following Now 2 boys in need of life saving treatment. Let's get to 77k for 7/7 in memory of Archie.🧡 Please Follow us & Donate ⬇️
Parent Project Muscul.. @ParentProjectMD
7K Followers 1K Following Let's fight for every future. #PPMDeveryfuture #EndDuchenne
Defeat Duchenne Canad.. @defeatduchenne
1K Followers 795 Following Defeat Duchenne Canada is the country’s only national charity dedicated to ending Duchenne muscular dystrophy.
DMD Aileleri Derneği @Dmd_aileleri
3K Followers 48 Following Nadir hastalıklar arasında yer alan Duchenne Musküler Distrofisi (DMD), çocukluktan itibaren belirti veren ilerleyici bir kas erimesi hastalığıdır.
Susanne Driffield @s_driffield
509 Followers 1K Following Regional Development Manager at Muscular Dystrophy UK. Proud Trustee of Disability Action Yorkshire. Mum to my DMD superhero Joe. All views are my own.
Carmela Chillery-Wats.. @Cure4Carmela
2K Followers 3K Following Age 10 disability #influencer #advocate with a progressive muscle-wasting condition #LMNACMD, giving hope to others. #musculardystrophy
Pathfinders Neuromusc.. @PathfindersNMA
2K Followers 436 Following User-led organisation, campaigning for choice, control & quality of life for adults with #MuscularDystrophy and related conditions. We offer peer support & info
Rachel Kennedy, PhD @Physio_Rachel
502 Followers 448 Following GYM-SPARC VicHealth project @LaTrobe Neuromuscular physio, clinician-researcher @RCHMelbourne @MCRI_for_kids Churchill Fellow Exercise for NMD 🚴🚶♀️🧘♀️
JLH @J_L_H_23
369 Followers 1K Following
Benjamin VERROEST @bverroest
1 Followers 25 Following
George Karas @gkarastrader
12 Followers 754 Following
ganon110 @ganon1102
49 Followers 171 Following
MC @MC41693847
65 Followers 324 Following
Tony Wu @TonyWuHoo
59 Followers 665 Following
Charles Adams @ca7301
2 Followers 596 Following
Sanne @sir234568
1 Followers 23 Following
Joshua Busby @joshuabusby
1K Followers 734 Following Break barriers, achieve goals, & thrive, as I am with Duchenne MD. | Husband, Dad, Minister✝ Certified Life Coach https://t.co/q4VNfhscHe
WebinarTV.us @WebinarTVus
197K Followers 144K Following Host your next webinar for free on https://t.co/TyvKAslWXK. Stop paying Zoom and other competitors to put on a webinar. All the features, none of the fees at https://t.co/TyvKAslWXK
hassan @Hpopi1Hassan
2 Followers 86 Following
Bobby @Bobby_Johnson16
107 Followers 464 Following
Lumc_neuromuscular @Lumcspierziekte
0 Followers 12 Following We provide care to patients with neuromuscular diseases such as Duchenne and Becker. Take a look at our page and follow our daily activities!
Suewinda @suewinda99410
17 Followers 342 Following
I'm Still Standing @leestillstandin
661 Followers 800 Following 45 years old. Duchennes MD sufferer. Looking to raise awareness of a horrible condition but still living a postive live as a Husband, Dad and all round good Guy
kirubakaranpalaniyapp.. @kirubakaranpal1
0 Followers 23 Following
Gambella people,s For.. @Landindependent
93 Followers 2K Following Gambella people's For Independent ( G P I)
Drew Wilson @dre77740
1 Followers 19 Following
PPL @PPLthinks
1K Followers 2K Following We’re the UK’s leading social enterprise management consultancy and a B corp. We power positive, lasting change.
Jenna @munotjenna
0 Followers 117 Following
falcon @bos46476740
5 Followers 344 Following
MedAll @MedAllApp
6K Followers 3K Following We're on a mission to make great healthcare training and resources accessible, to every healthcare professional, everywhere. Will you join us?
ElMallah Lab @ElMallah_Lab
5 Followers 26 Following Duke University. Duke Childrens Hospital. AAV gene therapy. Novel therapies for respiratory insufficiency in neuromuscular disorders.
kirubakaran27 @kirubakaran2702
2 Followers 7 Following
Asaf Samet Bayraktar @asafsamet
397 Followers 5K Following Gazeteci / İçerik Üretici/ @trtspor @trtsporyildiz
Jose Antonio Oliva B @joseoliva_71
115 Followers 998 Following
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Solid Base Non-Profit.. @SolidBaseNPS
52 Followers 600 Following
Ajay Malik @AjayMalik497034
1 Followers 17 Following
Mohamed Ali @ma8535847
0 Followers 74 Following
Jo Macfarlane @jomacfarlane
1K Followers 2K Following Award-winning freelance journalist. Health/medical/science. Doesn't make candles 🏴
the master @pablo_arias_s
3 Followers 64 Following
Dr Jane Brearley @JBrearley
610 Followers 2K Following Founder and CEO of Intent Health, an agency built on the foundations that true diversity, creates stronger teams and more relevant campaigns
Heather Graz @heather_biophys
502 Followers 542 Following Facilitating smooth technical & managerial change management in SMEs & corporations. https://t.co/4wKTLWFvFd
Claire James @clairejames96
258 Followers 2K Following
Shaban Ali @ShabanA23144904
1 Followers 142 Following
Sarah Kasner @rahdevries
91 Followers 123 Following mom, step-mom, wife, best youngest daughter, sister, employee, yogi, runner
wowcasanova @wowcasanova
1K Followers 5K Following "Politics is the art of looking for trouble, finding it everywhere, diagnosing it incorrectly and applying the wrong remedies. " Groucho Marx
John Huyton @JohnHuyton
705 Followers 974 Following Engineer, various roles Orrell RUFC. Current role Club Secretary. Disclaimer: The views & opinions expressed here are those of the author.
Sreekanth J Pillai @sjpillai
0 Followers 186 Following A simple soul, views always my own; retweet’s don’t always = agreement
Hyphen8 @teamHyphen8
513 Followers 752 Following We are a #Salesforce Impact consulting partner who help non-profits with solution design, implementation and support. Specialists in grant-making solutions
RxDataWatch @RxDataWatch
48 Followers 201 Following
Joining Jack @alljoinjack
63K Followers 2K Following We are joining Jack in the fight to find a cure for duchenne muscular dystrophy. Will you?
AnnemiekeAartsma-Rus @oligogirl
3K Followers 486 Following Translating science from bench to bedside and from jargon to lay language
Muscular Dystrophy UK @MDUK_News
18K Followers 3K Following We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
Saracens Rugby Club @Saracens
123K Followers 995 Following The official X account of Saracens Rugby Club. Join us as a Seasonal Member in 24/25! #YourSaracens💫
England Rugby @EnglandRugby
1.1M Followers 39K Following The official home of England Rugby on X. For the Red Roses 👉 @RedRosesRugby For community game updates 👉 @RFU
Sarepta Therapeutics @Sarepta
5K Followers 62 Following Commercial-stage biopharma company focused on the discovery & development of precision genetic medicine to treat rare neuromuscular diseases. https://t.co/HFP4txOCxe
CureDuchenne @CureDuchenne
6K Followers 510 Following We are committed to improving the lives of those affected by Duchenne through accelerating research, improving care and empowering the community.
World Duchenne Organi.. @worldduchenne
3K Followers 1K Following Global organization to find a cure and viable treatment for those lives affected by dystrophinopathies: Duchenne and Becker Muscular Dystrophy. RT ≠ endorsement
Matthew S. Alexander @Matt_Muscle_Guy
5K Followers 4K Following Geneticist, Skeletal Muscle, Drug development, Gene therapies. Non-coding RNA, and Zebrafish Aficionado. All tweets are my own. Instagram @thealexanderlab
Jordi Díaz-Manera @querques2000
777 Followers 967 Following Professor of Neuromuscular Diseases at Newcastle University @jwmdrc. Passionate about clinical and basic research, but also about wine, sport, music and books.
JWMDRC @jwmdrc
1K Followers 501 Following John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University #dmd #sma #lgmd #fshd #dm1 #gne #col6 #cnm
TREAT-NMD @TREAT_NMD
4K Followers 565 Following Advancing diagnosis, care and treatment for those living with neuromuscular diseases around the world
WMS @WorldMuscleSoc
2K Followers 663 Following We invite you to the 28th International Annual Congress of the World Muscle Society in 2023. This is the premier annual Congress on #neuromuscular disorders.
Terri Ellsworth @TerriEllsworth
2K Followers 2K Following Duchenne Advocate/Rare Disease Activist Mom, Designing Mom-Creating awareness & advocating for approval of safe & effective drugs. Words are always my own.
Join Our Boys Trust @joinourboys
8K Followers 3K Following Now 2 boys in need of life saving treatment. Let's get to 77k for 7/7 in memory of Archie.🧡 Please Follow us & Donate ⬇️
Parent Project Muscul.. @ParentProjectMD
7K Followers 1K Following Let's fight for every future. #PPMDeveryfuture #EndDuchenne
Defeat Duchenne Canad.. @defeatduchenne
1K Followers 795 Following Defeat Duchenne Canada is the country’s only national charity dedicated to ending Duchenne muscular dystrophy.
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Muscular Dystrophy As.. @MDAorg
21K Followers 2K Following MDA is the #1 voluntary health organization in the United States for people living with #MuscularDystrophy, #ALS, and related #neuromuscular diseases.
Pathfinders Neuromusc.. @PathfindersNMA
2K Followers 436 Following User-led organisation, campaigning for choice, control & quality of life for adults with #MuscularDystrophy and related conditions. We offer peer support & info
Jo Macfarlane @jomacfarlane
1K Followers 2K Following Award-winning freelance journalist. Health/medical/science. Doesn't make candles 🏴
Broadside Hacks @BroadsideHacks
489 Followers 335 Following London-based collective and record label. Live agent: [email protected] MGMT: [email protected] Label/Folk Club: [email protected]
project-paladin @eu_paladin
44 Followers 15 Following The Patient Lifestyle and Disease Data Interactium (PaLaDIn), is an ambitious Innovative Health Initiative (IHI) funded initiative.
enstargroup.com @enstargroup
160 Followers 190 Following A leading global insurance group that delivers innovative insurance solutions through our network of group companies
James O'Shaughnessy @jamesosh
8K Followers 115 Following Senior Partner https://t.co/0uYmyTykZR // Visiting Prof. @Imperial_IGHI // Non-Exec @HDR_UK & @albionvc // HMG Review of Clinical Trials https://t.co/1L6qHmG4UQ
Riz Lateef @RizLateef
17K Followers 1K Following Asks questions. Loves chocolate. Face of @bbclondonnews telly. RTS national award winner. And Fri mornings on @bbcradioLondon 6-10am
Barry Caffrey @BarryCaffrey
2K Followers 3K Following BBC Broadcaster - Reporter and Presenter 📺 📻 🎤 / Irish in London / Views my own. (DMs open) 📧 [email protected]
Gemma Stevenson @Gemstevenson1
892 Followers 1K Following Mum 💕wife ❤️ Senior Journalist @BBCRadioLondon 📻 but mostly I'll be sleeping because I finished the London Marathon 2011+12 🏃♀️#Bedford
Adam Bloodworth @Adamzx
4K Followers 3K Following 🌈Journalist | Deputy Life & Style Editor & Travel Editor, @CityAM. Formerly features for @HuffPostUK /🍹 VK Tropical fan, mourning the loss of Bacardi Breezer
adam becket @adambecket
4K Followers 2K Following News editor online and in print @cyclingweekly. Ex Procycling mag. Likely to be at a bike race, in the pub or looking at paintings. More matter with less art.
Vern Pitt @VernPitt
1K Followers 2K Following Lover of metal, hip hop and shiny carbon things. Journalism lecturer at Bournemouth Uni, cycling and business hack. Half-baked opinions all my own.
Rachel Jary @racheljaryy
1K Followers 517 Following part of the team at @rouleur - mostly spending the rest of my time on a bike 🚴♀️
Edward Pickering @EdwardPickering
9K Followers 285 Following Editor, Rouleur: https://t.co/ZC7Agy6u1C Author of Ronde & Yellow Jersey Club Taiko: https://t.co/uq9hLmXv0t Running: https://t.co/R0IALePK8X
Julia Faulkner 🇪�.. @DietitianJulia
463 Followers 675 Following Paediatric Dietitian. Interests include CF, Diabetes, Neonatal, and OA/TOF nutrition. ‘Unhealthy’ interest in the oesophagus! Thoughts and views are my own.
Ashley @WilkieAshley
129 Followers 587 Following
Sarah Brown @SarahJBr0wn
371 Followers 337 Following Paediatric Neuromuscular Physiotherapist. Royal Hospital for Children Glasgow. All views my own.
Evoke Mind+Matter @evokemindmatter
3K Followers 921 Following Evoke Mind+Matter is now Inizio Evoke. Follow @inizioevoke to stay up-to-date with the latest news and insights.
Emma Westcott @ecwestcott
3K Followers 4K Following Assistant Director, Strategy and Insight at the Nursing and Midwifery Council - but tweets own views. Social policy, art, cats. #girlyswot
Dorothy @tototooz
27 Followers 211 Following Retired NHS staff nurse NHSGGC, carer & general upstart 🏴🇺🇦
Asociația Parent Pro.. @ParentProjectRo
8 Followers 20 Following Assistance & research of Duchenne Muscular Dystrophy DMD & the less severe form Becker Muscular Dystrophy DMB
Colin Werth @cjwerth10
127 Followers 292 Following
Louise Wood @klouisewood
5K Followers 295 Following Independent Adviser and NED. Chair @AMRC Former Dir of Science, Research & Evidence @DHSCgovuk, Deputy CEO @NIHRresearch and @The_MRC Council member.VMO
Anne Marie Morris MP @AnneMarieMorris
22K Followers 802 Following MP for Newton Abbot. Queries: [email protected] / 01626 368277
الأستاذ عيد.. @eidalanzy
361 Followers 474 Following سامح دائما وأحب من قلبك، وأغفر لمن أخطئوا في حقك، فربما لن تأتي لك فرصة للحب والتسامح مرة أخرى.. 💕
Danielle Debruin, PhD @ddebruin9
545 Followers 522 Following Post-doc @UniOfSurrey | Adjunct Fellow @iHealthSportVU @AIMSSResearch | Extracellular matrix remodelling and disease 🫀🫁💪 | she/her
abdullah @AbedullahJoma
41 Followers 1K Following
Anders Lundstrom @KarlLundstrom85
20 Followers 138 Following
Cfranc @claireloufranc1
9 Followers 68 Following
DIYAR BARKAL @dlsyr381596
7 Followers 41 Following Becker muscular dystrophy From: syria 20 years old whatsapp : +963992029169
Plumbase @plumbaseuk
11K Followers 2K Following National plumbing, heating, bathroom & boiler spares merchant for professional trade installers & plumbers. Find your nearest Plumbase here - https://t.co/F9nmmZ2Vrv
Dennis Holmes @denzeeld
347 Followers 861 Following Health & Care advisory, ex Local Gov, current NHS. M.O.T. All tweets issued in a strictly personal capacity !!
Richard Honey 🇺�.. @dg3design
465 Followers 1K Following graphic designer, singer, love soul, Leeds United (naturally). A share or re-tweet means I probably agree - except when I don't.
Dierdre West @DierdreWest
70 Followers 192 Following
Cath Coutinho @alborough
134 Followers 749 Following
Neil Brandom @NeilBrandom
312 Followers 585 Following North London family but somehow born in Sierra Leone, raised in Australia, live in Cali. Creaky old surfer. Father of 3 husband to 1. CFO at Goldenseed. COYS.
Liam McNeill @William92786781
1K Followers 1K Following Retired opinionated Scottish primary teacher, husband, father and 'crazy' grandpa.
Karen Bass @karenbass2021
127 Followers 240 Following
malcolm sevenoaks @malcolmsevenoa4
293 Followers 504 Following Out would thinking accountant, who following AFC Bournemouth and proud father of Adam who has Duchenne Muscular Dystrophy and smashes the disability barriers
PRCA @PRCA_HQ
35K Followers 4K Following We are the world’s largest professional PR body, representing 35,000 public relations professionals worldwide.
RoySocMed @RoySocMed
28K Followers 3K Following The Royal Society of Medicine is a leading provider of continuing learning to healthcare professionals. Our vision: better healthcare for better lives.
Lyn Thain @ThainLyn
49 Followers 45 Following
@DuchenneUK Well done all of you! You are all incredible!. Fantastic amount of money towards finding a cure for DMD, for our boys Thank you so so much xx
@DuchenneUK Cheers, Paul & Lisa, from Olly & Josh....
#DuchenneDash training is not all sunny days, bluebell fields & cycling down hills - sadly! There have been a few of those, but there's also been cycling in the rain and the cold, uphill slogs on my own and even a very slow motion fall off my bike (embarrassingly) a few weeks ago
However, DMD is still (sadly) very real and supporting Duchenne UK is already making a huge difference. With your help, together we can #EndDuchenne. I'm massively grateful as ever for any donations received justgiving.com/page/dan-cross…
I need to do more training in the last few weeks before the big ride (London to Paris in 24 hours on 17th-18th May). It's all for the amazing @DuchenneUK. I think it's my 9th Dash, including adapted versions during the pandemic, so I've asked lots of times before for sponsorship
@DuchenneUK Well done, Simon from Josh and Olly. You did us proud.
This paper describes the clinical features and response to steroids of a large cohort of adult DMD patients. This work shows that steroids do have an effect in adult patients by preserving cardiorespiratory function and ambulation @jwmdrc @DuchenneUK onlinelibrary.wiley.com/doi/10.1111/en…
Qualitative research led by @SarahJBr0wn on experience of physiotherapists on mgmt of fracture femur in #DMD to shed light/improve clinical guidance for physio/rehab @DuchenneUK @ActionDuchenne @MDUK_News @DuchenneFSG
Calling all paediatric physiotherapists who have experience of working with boys with Duchenne Muscular Dystrophy following a femur fracture 📣 I am now recruiting for my MSc Advanced Practice dissertation research study. Please share with anyone who may be interested in helping.
Calling all paediatric physiotherapists who have experience of working with boys with Duchenne Muscular Dystrophy following a femur fracture 📣 I am now recruiting for my MSc Advanced Practice dissertation research study. Please share with anyone who may be interested in helping.
Thank you @owen_faz for being a legend on the rugby field and also for all the incredible support you’ve given to @alljoinjack & @DuchenneUK 🙏 #EndDuchenne
"𝙈𝙤𝙨𝙩 𝙞𝙢𝙥𝙤𝙧𝙩𝙖𝙣𝙩𝙡𝙮, 𝙩𝙝𝙖𝙣𝙠𝙨 𝙛𝙤𝙧 𝙗𝙚𝙞𝙣𝙜 𝙢𝙮 𝙛𝙧𝙞𝙚𝙣𝙙." An incredibly special shirt presentation for @owen_faz. 🥹 Thank you, @alljoinjack! #YourSaracens💫
We were so proud of Jack and his friend @owen_faz 🐐
"𝙈𝙤𝙨𝙩 𝙞𝙢𝙥𝙤𝙧𝙩𝙖𝙣𝙩𝙡𝙮, 𝙩𝙝𝙖𝙣𝙠𝙨 𝙛𝙤𝙧 𝙗𝙚𝙞𝙣𝙜 𝙢𝙮 𝙛𝙧𝙞𝙚𝙣𝙙." An incredibly special shirt presentation for @owen_faz. 🥹 Thank you, @alljoinjack! #YourSaracens💫
Gorgeous photo of two gorgeous people. Really excited to see this film, and the latest developments in technology supporting disabled people.
Tune in to @BBCNews at 12.45pm today and @BBCBreakfast tomorrow to watch an interview with our co-founder and Chief Executive, Emily Reuben OBE, and her son, Eli. They’ll share their story and tell you how we’re seeking out a new world for people with disabilities.
Welcome to our Social Media Day Help us to raise awareness on the importance of personal assistants and support workers. Disabled people across the UK are facing a social care crisis with many forced into residential care or living without the proper care. #MyCareMyLife
PaLaDIn partners bring together their individual expertise in NMDs to collaborate to achieve 7 ambitious goals. Our third goal is to maximise the utility, interoperability and reusability of data, that will feed into the PaLaDIn Interactium. For more info: bit.ly/3UxsrZ5
Prof John Isaacs talks about the virtuous cycle of research and care at the BRC Newcastle Celebration Day. Really resonates with the principles of DMD Care UK and the DMD Hub - embedding research into Standards of Care and vice versa @DuchenneUK @NIHRNewcBRC
We're so proud of @WSHAScotland's Lynette! Inspiring stuff🥰
We want to shout out Lynette Baillie who took on a skydive for us and raised over £1,000! "I had the most amazing experience jumping from a plane at 10,000ft, free falling at 120mph before taking in the views of Fife as I navigated to the ground🪂" duchenneuk.org/skydive/
At the New Horizons conference we were pleased to receive very positive feedback from patients for care and clinical trial participation, from @DuchenneUK for our collaborative approach and high delivery, and from Pharma for the high standards clinical trial set up and delivery😊
PaLaDIn brings together nine organisations with expertise in NMDs, patient advocacy and data science to collaborate to achieve our ambitious goals. Our second goal is to improve and increase PROMs available to the NMD community. For more info bit.ly/3UxsrZ5
@oligogirl @DuchenneUK ...and one of those delightful bunnies just hopped into my bag and is now on the train home with us! Thank you so much for such an insightful presentation (and an origami bunny!) 🐇 @DuchenneUK
Fabulous care meeting and amazing conference - changing lives and futures! - well done @DuchenneUK !! Xx
Alongside our charity partners @DuchenneUK and @DuchenneRF we are pledging £1milliom to fund the next 3 years of DMD Care UK to integrate into our work on the DMD Hub, clinical trial network & research programmes - thanks to YOU! #thebestsupporters #TeamJJ #makeadifference 👉👈
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