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Coffee and Cake Day for SMA Support UK! Coffee and Cake Day for SMA Support UK!

01 November 2016 / Posted in: Help Us

Join our community of fundraisers this year and bring people you know together over a cup of coffee and a piece of cake and at the same time raise awareness and funds for families and individuals affected by Spinal Muscular Atrophy.

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Shoesday! Shoesday!

01 November 2016 / Posted in: Help Us

Join us on Shoesday 11th July 2017! Take part in Shoesday with your clasSMAtes to help raise money and awareness of SMA.

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Tom and Sian's Walk in Memory of Bethan Tom and Sian's Walk in Memory of Bethan

01 November 2016 / Posted in: Help Us

We would like to say a huge thank you to Tom Wainwright and Sian Haigh who walked 44.1 miles from the John Radcliffe Hospital in Oxford to Northampton School for Girls in memory of Bethan Haigh.

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FDA Accept Nusinersen For Priority Review

31 October 2016 / Posted in: Research

Biogen have announced that their New Drug Application (NDA) for Nusinersen has been accepted by the US Food and Drug Administration (FDA) for Priority Review.

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Disability North’s International Day of Disabled People 2016

26 October 2016 / Posted in: Information & Support

Each year, Disability North holds an event to celebrate the United Nation’s International Day of Disabled People. The event is a celebration of the services, facilities and projects in the region that promote inclusion and access for disabled people.

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Supporter of the Month: October 2016 Supporter of the Month: October 2016

24 October 2016 / Posted in: Our Community

It is with much enthusiasm that we can announce that our Supporter of the Month for October 2016 is Martyn Sibley!

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EURORDIS Awards 2017

21 October 2016 / Posted in: Information & Support

EURORDIS – who represent rare disease patient organisations – have opened the nominations for the EURORDIS Awards 2017.

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Biogen And Ionis Provide Update On European Nusinersen Approval Process

11 October 2016 / Posted in: Research

In response to requests for information, Biogen and Ionis provide an update on the progress made in moving the nusinersen development program forward.

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Views Sought On The Use Of Non-Invasive Prenatal Testing (NIPT)

06 October 2016 / Posted in: Research

The Nuffield Council on Bioethics is thinking about the ethical issues raised by NIPT and would like to talk to people over 18 who have SMA about their views on current and future uses of NIPT.

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Petition To Change Law

28 September 2016 / Posted in: Information & Support

Steven, who has SMA Type 2 and is currently abroad as part of an Erasmus programme, has set up a petition as the DWP has told him that after 13 weeks abroad he will no longer be entitled to his motability vehicle.

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