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New Clinical Care Research Article: End Of Life Care

12 August 2016 / Posted in: Research

In this article, Dr. Alex Murphy describes the sensitivity of discussions around 'end of life care'. He also introduces some of the studies that have been carried out to examine the effectiveness of palliative care.

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Biogen and Ionis Pharmaceuticals' Statement re Nusinersen Announcement

02 August 2016 / Posted in: Research

Biogen and Ionis Pharmaceuticals have announced that Nusinersen has met the primary endpoint in an interim analysis of the phase 3 ENDEAR Study in infants with Infantile-Onset SMA.

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AVXS-101 Receives “Breakthrough Therapy Designation”

28 July 2016 / Posted in: Research

The US Food and Drug Administration (FDA) has granted “Breakthrough Therapy” status to AVXS-101, a gene therapy drug with future potential to treat SMA.

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New SMA Voices: Mia

26 July 2016 / Posted in: Information & Support

Mia watched a video talk by Stella Young. It got her thinking and prompted the 14 year old to share her own thoughts and reflections with us.

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New SMA Voices: Luke

22 July 2016 / Posted in: Information & Support

Luke is 15 years old and in year 10 at school. He recently did a week’s work experience at a police station in Gloucester and spoke to SMA Support UK about how it went.

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PIP: Second Independent Review Call For Evidence

21 July 2016 / Posted in: Information & Support

The Department for Work and Pensions has appointed Paul Gray to undertake the second independent review of the Personal Independence Payment (PIP) assessment. This consultation closes 6 September 2016 5:00pm.

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MDUK Launches Report - Physiotherapy Provision Is Overstretched

19 July 2016 / Posted in: Information & Support

MDUK reveals that 60% of individuals with a muscle-wasting condition are unable to access appropriate physiotherapy for their condition.

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Supporters of the Month: July 2016 Supporters of the Month: July 2016

19 July 2016 / Posted in: Our Community

Over the past year, Joe and his friends Martin, Craig, Darren, Marcus, Deano, Kieran, Clark, Guy and their families have given SMA Support UK tremendous support. Find out more about their fundraising story.

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Notice For Members

19 July 2016 / Posted in: Information & Support

A reminder that the deadline for new Trustee nominations is the 31st July 2016 at 5pm. Please contact us should you require any additional forms by emailing office@smasupportuk.org.uk

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Sharing Experiences

07 July 2016 / Posted in: Information & Support

In reviewing the value and importance of our Peer Support Service in its widest sense, we’re introducing a new (and hopefully clearer) umbrella term of ‘Sharing Experiences’. This will bring together our Peer Support Service and additional opportunities for being in touch with others.

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