Biogen’s Community Update Concerning Those Transferring from the Nusinersen EAP to the Managed Access Agreement

27 September 2019 / Posted in: Treatments & Research

Some families whose children are transferring from the Expanded Access Programme to the MAA have expressed concerns about future treatment. We contacted Biogen and NHS England for answers and reassurance.

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Quicksilver Media Looking For Families Accessing Spinraza To Take Part In Documentary

25 September 2019 / Posted in: Information, Treatments & Research, Support

Quicksilver media are currently making a documentary about the possible implications for drug budgets of any UK-US trade deal, for Channel 4's Dispatches strand, and are looking for families with children who have recently (within the last 4 months) started treatment with Spinraza / nusinersen.

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All Party Parliamentary Group on Access to Medicines and Medical Devices makes recommendations for the NICE Methods Review

25 September 2019 / Posted in: Treatments & Research

Representing the views of a broadly-based group of stakeholders (including SMAUK) this report will be taken to the Government, the NHS, and NICE, to continue dialogue about what should change to support better patient access to innovative therapies.

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Biogen Community Update on DEVOTE Clinical Trial

20 September 2019 / Posted in: Treatments & Research

Announced publicly at the 13th Congress of the European Paediatric Neurology Society (EPNS), the DEVOTE study will evaluate if higher dosing of nusinersen can provide improved efficacy in the treatment of SMA across a broad population of patients.

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SMA Matters Autumn 2019

16 September 2019 / Posted in: Information, Support

This edition, and previous editions, of our SMA Matters newsletter are now available to download from our website.

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Survey About Your Child’s Experience Of Sport & Activity

12 September 2019 / Posted in: Information, Support

Activity Alliance, a national charity, wants to hear from parents and disabled children about their experience of sport and activity.

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Physiotherapy - Based Measures (HINE, CHOP INTEND, HMFSE) for People with SMA and how they are used to Monitor Treatment Outcomes

02 September 2019 / Posted in: Treatments & Research

In this new article, our Clinical Care Research Correspondent, Dr Alex Murphy, summarises: the way some of the more commonly used physiotherapy-based outcome measures in SMA work; the research that shows how these measures would be expected to progress for those with SMA who have not accessed drug treatments.

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Living With SMA Launched!

02 September 2019 / Posted in: Information, Support

We’re delighted to announce the launch of this brand-new section of our website. It builds on knowledge and advice from the SMA Community and SMA UK’s Support Services Team, and covers a whole host of topics. If you have tips, stories and photos you’d like us to add, please do get in touch and share your experiences.

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Please Help Us To Find Suitable Event Venues

28 August 2019 / Posted in: Information

We're in the process of trying to find new accessible venues for all our events, so if you know of any that we can check out, please do let us know. Find out more here about the sort of venue / facilities we need.

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Do You Know Someone Who Deserves or Needs a Brand-New Garden Makeover?

13 August 2019 / Posted in: Information

ITV1's garden makeover show 'Love Your Garden with Alan Titchmarsh' is back in Autumn 2019. They're looking for families / individuals to apply or nominate someone who could benefit. Closing date 30th September.

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