Our Editor Peter is running Marathons in May for MDUK!
Through the month of May this year, Peter will be running marathons to raise funds – and awareness – for Muscular Dystrophy UK! It all starts on Monday 1st May with 26 miles in the Belfast Marathon, then on to the Windermere Marathon, before finishing with the Manchester 10k. So two and a quarter marathons to be precise! With the Belfast Marathon being in the hometown of our co-editor, stay tuned for video updates from the two. And look out for what might be a slightly intere
London Marathon 2017 - Tweets and MD Runners!
Congratulations to all the fantastic fundraisers who took part in yesterday's London Marathon, raising thousands for charities like Muscular Dystrophy UK, Action Duchenne, Duchenne UK, The SMA Trust and Joining Jack!
Those are just a few of the charities we saw and have added here! Can you spot any runners or volunteers you know?! #london #londonmarathon #mduk #musculardystrophyuk #fundraising
Muscle Owl Talks Ep47: EHRC & Disability Discrimination (April 2017)
This month, the Equality and Human Rights Commission launched their 2017 Disability Report, which covered six key areas of life. It concluded progress towards real equality for disabled people over the past twenty years is insufficient and littered with missed opportunities and failures.
Here are our views and response. #ehrc #equality #socialjustice #Disability #disabilityrights #disabled #muscleowltalks #peterduffy #michaelahollywood #zoehallam
Muscle Owl Talks Ep46: Spinraza Approved for All Types of SMA by EMA (Europe)
On Friday we received the news that Spinraza - the latest (and first) treatment for spinal muscular atrophy - had been approved by the EMA for use in all types of SMA across Europe.
Here's our catch up chat on the subject, and you can read the full EMA report here: https://www.muscleowl.com/single-post/2017/04/21/SPINRAZA-APPROVED-EMA #muscleowltalks #peterduffy #michaelahollywood #spinraza #science #research #sma
SPINRAZA APPROVED by EMA for all types of SMA
After receiving approval from the FDA in the United States, the long awaited treatment for spinal muscular atrophy (SMA) has been approved for use in Europe. The EMA has granted a license for use in all types of 5q SMA. Now families and charities such as Muscular Dystrophy UK will be pushing for the needed decisions from NICE & NHS England as well as the Scottish Medicines Consortium and the Health and Social care board in Northern Ireland to make Spinraza available to all wi
Baroness Celia Thomas Speaks to MDUK About PIP Reform & Motability
As we discussed in our most recent episode of Muscle Owl Talks, 900 disabled people across the UK are losing their Motability cars each week due to changes in personal independence payments.
Here is Baroness Celia Thomas, who has limb girdle muscular dystrophy, speaking to Muscular Dystrophy UK yesterday about her views on the PIP reform.
Muscle Owl Talks Ep45: Taxi Ruling in the UK
In the UK, we've recently seen a taxi ruling, which now means taxis won't legally be allowed to charge more for a wheelchair user using one of their accessible vehicles. Unfortunately, this doesn't eliminate the extra fares often charged for the additional time taken getting wheelchairs into and out of the taxis. Here we discuss!
PIP and Subsequent Motability Cuts Discussed on BBC Five Live
In a clip from April 12th 2017 from BBC five live, PIP reforms and the subsequent motability cuts were raised. Over 50,000 disabled people in the UK have now lost their adapted vehicles as a consequence of the PIP reforms. Take a listen below.
Muscle Owl Talks Ep44: Disabled People LOSING Right to Motability Vehicle
In the UK, the latest changes to Personal Independence Payments mean many disabled people are having their motability cars taken away from them. A large amount of these people have conditions such as becker muscular dystrophy, and may struggle to walk even short distances. Here's our latest update. #motability #driving #travel #pip #government #politics #uk #disability
UK Parliament: PIP Appeals (April 2017)
Last week saw an emergency debate to discuss the UK government's changes to Personal Independence Payments. Here's a clip from the debate as Stephen Kinnock MP raised the issue of constituents consistently having to appeal in order to receive the correct level of benefit. What are your experiences with PIP? #politics #parliament #pip
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