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Katherine's Fundraising Story Katherine's Fundraising Story

02 February 2017 / Posted in: Help Us

Katherine shares memories of her niece Amber, who had SMA Type 1 and sadly passed away, and why she was inspired to raise funds for SMA Support UK.

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Carl's 2017 Challenge! Carl's 2017 Challenge!

24 January 2017 / Posted in: Help Us

Carl is hoping to raise £2017 for the 2017 miles he'll be running in 2017! Read more here about why he's taking on this challenge for SMA Support UK.

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Update on the UK Expanded Access Programme (EAP) for Nusinersen for Children with SMA Type 1

20 January 2017 / Posted in: Research

SMA Support UK, Muscular Dystrophy UK and the SMA Trust have been talking with Biogen about what progress there has been on extending the EAP in the UK. You can read the update here.

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Biogen and SMA Europe Provide Community Update on Nusinersen

19 January 2017 / Posted in: Research

In response to a request from SMA Europe, Biogen and the board members of SMA Europe had a call on Wednesday 11th January 2017 to discuss the latest update on nusinersen.

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Joint Charities’ update following the NICE Scoping workshop (13th January 2017)

19 January 2017 / Posted in: Research

Representatives from SMA Support UK, MD UK, The SMA Trust and others attended a workshop which looked at the draft remit and scope for the proposed Technology Appraisal of nusinersen for treating spinal muscular atrophy.

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Roche drug RG7916 granted Orphan Drug Status in the US

17 January 2017 / Posted in: Research

The US Food and Drug Administration (FDA) has granted Orphan Drug Status to RG7916, a splice-modifying drug developed through a partnership between Roche, PTC Therapeutics, and the SMA Foundation.

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BBC Two's 'Big Life Fix'

12 January 2017 / Posted in: Information & Support

The producers of this show (which sees a skilled team of scientists, engineers and designers create bespoke technology for individuals and groups) are looking for people, for their second series, who feel they could benefit from a tailor-made invention.

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Working to speed up the nusinersen (Spinraza) appraisal by the European Medicines Agency (EMA)

12 January 2017 / Posted in: Research

The first step towards possible licensing of Spinraza in the UK is for it to go through the EMA appraisal process. Read the joint letter sent by UK SMA charities asking the EMA to speed this up. Download a template letter if you want to write to your own MP.

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Neuromuscular Centre (NMC) Midlands

12 January 2017 / Posted in: Information & Support

NMC is holding an open day. The afternoon will enable people to learn about the facilities and support offered by the NMC and the chance to meet others and take part in taster sessions.

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Novel Antisense Therapy Removes the Brakes on SMN Protein Production

11 January 2017 / Posted in: Research

A potential new therapy for SMA, which could possibly be combined with other drugs such as Spinraza to enhance clinical effectiveness, has been identified and successfully tested in mouse models of the disease.

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