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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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NHS England replies to the joint clinicians/charities letter

29 September 2017 / Posted in: Research

The request to include those with more than two SMN2 copies and over 7 months of age in the SMA Type 1 nusinersen EAP is not yet successful. We are still waiting to hear from NICE about next steps.

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Novartis Releases Clinical Trial Update

27 September 2017 / Posted in: Research

Novartis has released the following community update for the LMI070 (branaplam) clinical trial.

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Roche’s SUNFISH study community update

19 September 2017 / Posted in: Research

Roche have provided an update on clinical trials of their SMN2 splice-modifying drug RG7916

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