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A ‘virtual’ postcard from Pompeii
Dear fellow MDUK members,
We are in Pompeii!
I have been here before many years ago, but I had no idea that pre that massive eruption Vesuvius – (it erupted and covered Pompeii in AD 79!!) Versuvius was twice as high and had just one peak.
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Lockdown: Chapter 3
I’m sure many of you who use PAs and carers are in similar circumstances to me right now, whereby all of a sudden, no matter how good your normal support structure is, you are back to relying on family and close friends for essential daily support.
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How acceptance therapy gave me the confidence to travel
This summer I travelled with Thomas and carer to a different city every week of the summer holidays
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A review on I, Daniel Blake – warning contains spoilers!
Having seen the trailers for this film at my local cinema and with my wife having a form of muscular dystrophy (oculopharangeal muscular dystrophy – OPMD), we were determined to see this film which we did last night (Tuesday 1st November).
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A holiday romance – or in my case a lifelong one!
Alan and I met on holiday in Magaluf; I was 18 and it was my first girlie holiday.
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City Bridge Trust Work Experience
Matilda Ibini, shares her story about work experience at the Muscular Dystrophy Campaign.
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The Library of Birmingham
A quick review
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What do you do with yours?
From Friday 18th October, the Care and Support Alliance are asking #WhatDoYouDoWithYours? Do you go to the shops, go to work, see your friends? We’re asking you to share on Twitter and Facebook what you can do in your life because of social care – to incr
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APPG for Muscular Dystrophy’s Inquiry Report Launch on access to drugs for rare diseases
N.B.: PLEASE NOTE, THAT ALL THOUGHTS, LINKS AND WORDS BELOW ARE MY OWN, AND DON’T NECESSARILY REFLECT THE OPINIONS OF THE MUSCULAR DYSTROPHY CAMPAIGN / TRAILBLAZERS OR MY WORK WITH THEM.
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A new way to book your airline passenger assistance
Recently we met with the disabled airline passengers booking company able2fly . They have a new idea for improving the booking of assistance when you fly. See what you make of their blog and concept.
News
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UK Rare Diseases Framework
UK Rare Diseases Framework published
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Important announcement for adults with DMD
MDUK announces completion of two projects we funded into DMD.
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AMO Pharma announces AMO-02 clinical trial
AMO-Pharma announces the initiation of REACH-CDM clinical trial
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Join Gabby Logan's live cooking lesson
Gabby will cook her Sri Lankan-style monkfish curry.
Events calendar
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1
Go Bright for the fight 2021
1 February 2021
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14
Go Bright for the fight – Virtual Balloon Race
14 February 2021
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6
Snowdonia Velocity Zip Slide for Georges Journey
6 March 2021
Near you
