News

SMA Trust News

UK SMA Research Consortium holds national research meeting in Oxford

The UK SMA Research Consortium held a research meeting last month with the aim of bringing other UK groups into the project. Industry representatives were also present. The event took place at St. Hugh’s College in Oxford on 13th June and involved Consortium investigators and guest speakers from national research groups presenting their work to…

READ ARTICLE

Ride Scorpion 2017

On 6th May, through the windy yet dry weather, keen and novice cyclers took on the third year of our Ride Scorpion event. It was a lovely day and a great atmosphere. Everybody finished and had a great time enjoying some of the best views that the Cotswolds can offer, followed by food and entertainment…

READ ARTICLE

The SMA Trust team is on the move!

Dear Supporter, The team has moved move! Our new contact details are: 3 Wychwood Court Cotswold Business Village Moreton in Marsh GL56 0JQ Tel: 01608 801020. Our old number (01789 801155) has been diverted indefinitely. Please note that we are still experiencing disruptions to both our IT and phone systems. We apologise for any inconvenience this may…

READ ARTICLE

nusinersen (Spinraza) – a milestone but not the end game

STATEMENT FROM THE SMA TRUST   The news from the US of the FDA’s approval of nusinersen (now marketed as Spinraza in the US), the first treatment for SMA, has changed the SMA landscape for ever.  Accelerated approval is also being sought from The European Medicines Agency (EMA) for a European licence and then it will…

READ ARTICLE

NICE Scoping Workshop – Joint charities update

Joint charities update following the NICE Scoping workshop to look at the draft remit and scope for the proposed Technology Appraisal, nusinersen for treating spinal muscular atrophy. Representatives from MDUK, The SMA Trust, SMA Support UK and Genetic Alliance attended a meeting with the National Institute of Health and Care Excellence (NICE) on 13th January,…

READ ARTICLE

The SMA Trust, MD UK & SMA Support UK write to the EMA

The SMA Trust, in partnership with Muscular Dystrophy UK and SMA Support UK have written to the EMA requesting assistance in ensuring nusinersen (Spinraza) is made available at the earliest possible time for the treatment of spinal muscular atrophy in patients in Europe. We have written to ask what steps the EMA can take to…

READ ARTICLE

Spinraza (Nusinersen) approved by FDA in the US

Joint statement from The SMA Trust, Muscular Dystrophy UK and SMA Support UK: Just before Christmas, the United States Food and Drug Administration (FDA) announced that it has approved Spinraza as a treatment for SMA. Spinraza is the brand name for the drug, nusinersen. This approval is for a broad licence, meaning that Spinraza can…

READ ARTICLE

SMA Trust Spinraza update

We’re delighted with the news of the FDA’s approval of Spinraza in the US (as we reported just before Christmas) and, like everyone else, very much hope for EMA approval in a few month’s time, followed by NICE and other bodies involved in approving new drugs in the UK . We’ve been working closely with…

READ ARTICLE

Update on Nusinersen Expanded Access Programme in the UK

Update on progress towards an Expanded Access Programme of the ENDEAR trial of nusinersen which treats eligible infants with Spinal Muscular Atrophy Type 1   Joint statement from The SMA Trust, SMA Support UK and Muscular Dystrophy UK.  Families may recall reading the last update in September 2016 which was released by the Principal Investigators from…

READ ARTICLE