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Cytokinetics Initiates Second Cohort in Phase 2 Trial of CK-2127107

26 April 2017 / Posted in: Research

Cytokinetics has announced that it has initiated enrolment of a second cohort of SMA patients with SMA Types 2, 3 or 4 in their phase 2 clinical trial of CK-2127107, in North America.

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Update on CHERISH and NURTURE clinical trials of Spinraza

25 April 2017 / Posted in: Research

Biogen and Ionis Pharmaceutical have released information on the CHERISH and NURTURE clinical trials of their gene therapy drug, Spinraza (formerly nusinersen).

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EMA recommends marketing authorisation for nusinersen

21 April 2017 / Posted in: Research

The Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) has recommended the marketing approval of nusinersen.

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New Clinical Care Research Article: Scoliosis in SMA

18 April 2017 / Posted in: Research

This new research article looks at recent research into different aspects of spinal surgery, in the treatment of scoliosis in Spinal Muscular Atrophy.

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Biogen Announces EAP for Nusinersen Will Not Extend More Widely Than SMA Type 1

13 April 2017 / Posted in: Research

Biogen have set out their reasoning for this decision. We understand many families will be bitterly disappointed by this news.

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SMA Voices: Ross SMA Voices: Ross

12 April 2017 / Posted in: Our Community

Ross Lannon is 23 years old and has Spinal Muscular Atrophy Type 2. He has written an SMA Voices for our website that describes his recent trip to the Calvert Trust in Exmoor with a group of friends.

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Clinicians' Open Letter about the EAP for Children with SMA Type 1 in the UK

06 April 2017 / Posted in: Research

Today, seventy clinicians, physiotherapists, study coordinators, industry and advocacy groups' representatives, including SMA Support UK, outline their position and recommendations to NICE, NHS England's Care and Clinical Reference Groups (CRGs), NHS Trusts and Biogen.

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Fundraising Night for SMA Support UK Fundraising Night for SMA Support UK

05 April 2017 / Posted in: Help Us

Molly Davies and her friends at Birmingham City University recently held a fundraising night for SMA Support UK, with live music and a raffle.

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AveXis announce results from AVXS-101 Phase I trial

05 April 2017 / Posted in: Research

AveXis has released results from the completed Phase I trial of their gene therapy drug for SMA, AVXS-101.

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Government Urged to Re-think its Proposed Changes to the HST Programme

29 March 2017 / Posted in: Research

SMA Support UK will today join Genetic Alliance UK and MDUK at the All Party Parliamentary Group for Muscular Dystrophy which NICE will also attend.

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