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Raising Awareness: Baby Loss Awareness Week

19 October 2017 / Posted in: Information & Support

A big thank you to everyone who got involved with raising awareness during Baby Loss Awareness Week. Included in the week was a reception at Westminster and discussions around the Baby Loss debate and National Bereavement Care Pathway.

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Disabled Children's Partnership Survey

19 October 2017 / Posted in: Information & Support

The Minister for Disabled People has asked the Disabled Children’s Partnership to help her gather the views of disabled children and young people. Take the survey here.

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What Is Happening About Access To Nusinersen?

18 October 2017 / Posted in: Research

We share the frustrations of the SMA Community that there has still been no announcement from NICE about whether it will assess the treatment for continued and wider provision of nusinersen by the NHS. Here is an update of what SMA Support UK is doing.

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Harry's Big Fun Run Challenge Harry's Big Fun Run Challenge

13 October 2017 / Posted in: Help Us

11 year old Harry is taking on the Big Fun Run Ipswich and is raising money for SMA Support UK. He explains here why he’s taking on this challenge.

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AveXis to Imminently Initiate AVXS-101 Pivotal Trial in the US

12 October 2017 / Posted in: Research

The Food and Drug Administration (FDA) has granted permission to AveXis to begin their planned US pivotal trial of their gene therapy drug for SMA, AVXS-101. Avexis say that they are to immediately begin the trial.

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Join MDUK's 'FastTrack' Campaign

11 October 2017 / Posted in: Research

Muscular Dystrophy UK are campaigning for faster access to specialist treatments, including Spinraza for SMA. You can find out more and support the 'FastTrack' Campaign here.

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We Need Volunteers! We Need Volunteers!

10 October 2017 / Posted in: Help Us

We’re looking for volunteers to help us sell our Christmas cards at Stratford-upon-Avon Christmas markets on 23rd November, 30th November and 7th December.

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Call for End to Postcode Lottery of Care for Bereaved Parents

09 October 2017 / Posted in: Information & Support

A coalition of more than 40 charities, including SMA Support UK, is today urging an end to the postcode lottery in bereavement care for parents.

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Campaign to Save Local Short Breaks Services

04 October 2017 / Posted in: Information & Support

Add your name to the DCP's letter calling on the Government to review the funding and availability of short breaks services.

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UK SMA Awareness Day 2017 - The Results! UK SMA Awareness Day 2017 - The Results!

02 October 2017 / Posted in: Our Community

Thank you to everyone who helped to make this Awareness Day campaign our biggest yet! Read the facts and figures here.

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