Muscle Owl

With the UK slowly coming out of lockdown, we take a look back at the events of recent months. Reflecting on how circumstances have varied & how everyone has been dealing with the situation in their own way. @DMDPathfinders @LucyAlexandria @DrJonHastie youtu.be/kCVo4ItTkdo

'It's exhausting, I was really angry' Former Paralympic champion Baroness Tanni Grey-Thompson spoke to #BBCBreakfast after she had to crawl off an LNER train at London King's Cross - when there was no-one to help her bbc.co.uk/news

If @lner’s new trains from CAF do not feature level boarding for passengers using wheelchairs, it will be interesting to hear the company’s explanation in the court cases that I suspect will follow. #levelboarding

At 22.17 (train got in at 22.02) I decided to crawl off. Had to move all my stuff onto the platform. Member of cleaning staff offered to help. They’re not insured.

@LNER you know when you fail to assist disabled passengers it’s unlawful right? Minimum £1200 compensation for a ONE OFF… this isn’t a one off. Why can’t you get your sht together & function properly? You’re in an industry based on comms & you can’t even get the basics right.

The theme of #WDAD21 is ‘Adult Life & Duchenne’. Today people with #Duchenne are increasingly living into their 20s, 30s and beyond thanks to advances in treatments. Whilst there is currently no cure, promising research is taking place. Find out more 👇 buff.ly/2WSkF0E

Today is World Duchenne Awareness Day. Here is our annual video with facts on the condition that affects around 300,000 families worldwide. @worldduchenne @DuchenneDay #WDAD2021 #wdad #Duchenne

🎬 WE ARE LIVE! It’s not too late to join the online event ‘Adult Life & Duchenne’. Click the link below to tune in. Interpretation in Spanish, Ukrainian and Russian. 🎈 live-online-events.zoom.us/webinar/regist…

🗓 1 week 👥 100 patient advocates 🌏 50 countries 💁‍♀️ 33 global experts ⏱ 20+ hours training Come join Duchenne Patient Academy 2020! #DuchennePA2020 Register before Nov 13 ↓ duchennepatientacademy.org #PatientAdvocacy #RareDisease #SciComm

Today is World Limb Girdle Awareness Day 2020. So here is one of our videos to share some facts and information about the condition. 🎈📚ℹ️🟢📗💚 #LimbGirdle #LGMD @LgmdDay #musculardystrophy

Tomorrow, the Nativity façade will be lit up in red from 9:00 pm to midnight in support of World Duchenne Awareness Day @DPPSpain #WDAD2020

Today it is World Duchenne Awareness Day #WDAD2020 around the globe amazing people are raising awareness for #Duchenne and #Becker Muscular Dystrophy. Don't miss at 15:00 CEST youtube.com/watch?v=yuB_87…

Tune in today September 7 at 9 AM EDT for a livestream event on #Duchenne and the brain, featuring PPMD's Clinical Care Advisor, Kathi Kinnett for #WDAD2020 worldduchenneday.org/wdad2020-onlin…

📹 AND WE ARE LIVE! Join the #livestream with clinicians, researchers and families who share their experience on learning and behavioral challenges in #Duchenne and #Becker MD. youtube.com/watch?v=yuB_87…

This week we discussed the logistics around managing personal care at this time, the added need for PPE, and catch up on the concerns Jon has publicly raised around prioritisation of treatments. youtube.com/watch?v=Tg2PDM… @peterdufs @DrJonHastie @DMDPathfinders #duchenne #DMD

Our latest chat on the coronavirus situation with @peterdufs and @DrJonHastie, joined this week by Benjamin James. youtu.be/Q0grjUPS46E @DMDPathfinders #Covid19 #shielding #guidelines #coronavirus #disabililty #Duchenne

I never thought I would use twitter to beg for my life. I'm angry and scared. We are all being betrayed if we let our most vulnerable people die. youtu.be/EcRtAsdpg30 @TheBMA @BnsJaneCampbell @Tanni_GT @DHSCgovuk @guardian @rarediseaseuk @GeneticAlliance

A powerful plea by @DMDPathfinders' Dr. Jon Hastie for equity for vulnerable people who get denied critical care in times of #COVID19 pandemic. "Why are we asking front-line staff to make heart-wrenching decisions on who to save?"

Advice on medications through the current Covid-19 pandemic for people with Duchenne, provided by Parent Project Muscular Dystrophy. Their full list of faqs is updated routinely and can be found at parentprojectmd.org #coronavirus #covid19 @ParentProjectMD

Thanks to @MuscleOwl for working with us and producing this great video (bear in mind it was recorded last week before the shielding guidelines were in place) facebook.com/muscleowl/vide… #DMDAdultLiving #COVID19