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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Access to Zolgensma Survey and Submission Sent to NICE

08 August 2019 / Posted in: Treatments & Research

Thanks to all who responded to our survey asking for your views on access to Zolgensma for infants with SMA Type 1. We've passed them on to MDUK & TreatSMA and used them in our joint submission with MDUK. Click here to see the results and our submission to NICE.

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Biogen’s Community Statement Answers Some Questions

07 August 2019 / Posted in: Treatments & Research

SMA UK, MDUK and TreatSMA jointly asked Biogen a number of questions relating to access to the nusinersen Managed Access Agreement with NHS England, and access in the UK in general.

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Potential SMA Treatment Granted Orphan Medicinal Product Designation By The European Medicines Agency (EMA)

31 July 2019 / Posted in: Treatments & Research

Cytokinetics announced that EMA has granted Orphan Medicinal Product Designation to reldesemtiv for the potential treatment of SMA. Reldesemtiv is a drug that has been shown, in the laboratory, to increase the force generated by skeletal muscle and delay the onset and extent of muscle fatigue.

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NICE Publishes Final Guidance Following Its Appraisal Of Nusinersen

24 July 2019 / Posted in: Treatments & Research

As there have been no appeals, access to the treatment will be as outlined in the Managed Access Agreement. We have not forgotten those who don't currently have access and will continue to work to change this.

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