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New Campaign: Tell the PM to Stop Universal Credit Cuts

02 August 2017 / Posted in: Information & Support

Contact a Family are concerned that around 100,000 parents with disabled children are at risk of being worse off on Universal Credit. Sign their petition to the prime minister to reverse cuts to child disability payments under Universal Credit.

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We're Looking for New Trustees We're Looking for New Trustees

01 August 2017 / Posted in: Our Community

We are currently looking for new trustees to join our trustee board to provide governance and strategic direction to the charity, and to support the small office team who are based in Stratford-upon-Avon.

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Our Brand New Coffee and Cake Day Packs are Here! Our Brand New Coffee and Cake Day Packs are Here!

01 August 2017 / Posted in: Help Us

Each pack includes prize-winning recipes, inspirational stories, posters, balloons and bunting to help make your event a success. Order yours for free now!

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Brief Report from the All Party Parliamentary Group that focused on nusinersen

21 July 2017 / Posted in: Research

Held on 18th July, this covered the current provision of nusinersen for infants with SMA Type 1 through the Expanded Access Programme (EAP) and what progress there has been towards the possibility of wider access.

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The One Show Making Film about the Issues Disabled People Face when using Public Transport

19 July 2017 / Posted in: Information & Support

They are looking for people to record short videos on their phones/cameras when they genuinely encounter a problem when using public transport.

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Join the Campaign!

19 July 2017 / Posted in: Information & Support

If you want to see a Changing Places toilet near you, setting up a local campaign group to gather support and lobby decision-makers in your area is an effective way of making that change happen.

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Our Survey: So What Did You Tell Us?

19 July 2017 / Posted in: Information & Support

Thank you to those of you who completed our survey and told us what you think of our current services and gave us your ideas about our future direction. Here are the results...

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Biogen announces how long they intend to keep open UK EAP for SMA Type 1

13 July 2017 / Posted in: Research

They state that this will be for ‘the remainder of the year in the UK’ and that they will ‘re-evaluate the progress of the reimbursement progress and the EAP towards the end of 2017’.

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PTC Therapeutics Provide Preliminary Clinical Data on RG7916

11 July 2017 / Posted in: Research

PTC Therapeutics presented an update on their splice-modifying drug, RG7916, at the 2017 Cure SMA Conference in Orlando, USA.

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Discussion about access to nusinersen

06 July 2017 / Posted in: Research

The All Party Parliamentary Group (APPG) for Muscular Dystrophy will discuss access to nusinersen on Tuesday 18th July in the Houses of Parliament. SMA Support UK and families will be there.

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