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).
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.
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.
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.
12 April 2017 / Posted in: Information & Support
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.
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.
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.
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.
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.
28 March 2017 / Posted in: Research
A workshop is taking place in London in January for people with a lived experience of genetic conditions as part of a new research project.