19 October 2017 / Posted in: Information & Support
The Minister for Disabled People has asked the Disabled Children’s Partnership to help her gather the views of disabled children and young people. Take the survey here.
18 October 2017 / Posted in: Research
We share the frustrations of the SMA Community that there has still been no announcement from NICE about whether it will assess the treatment for continued and wider provision of nusinersen by the NHS. Here is an update of what SMA Support UK is doing.
13 October 2017 / Posted in: Help Us
11 year old Harry is taking on the Big Fun Run Ipswich and is raising money for SMA Support UK. He explains here why he’s taking on this challenge.
12 October 2017 / Posted in: Research
The Food and Drug Administration (FDA) has granted permission to AveXis to begin their planned US pivotal trial of their gene therapy drug for SMA, AVXS-101. Avexis say that they are to immediately begin the trial.
11 October 2017 / Posted in: Research
Muscular Dystrophy UK are campaigning for faster access to specialist treatments, including Spinraza for SMA. You can find out more and support the 'FastTrack' Campaign here.
09 October 2017 / Posted in: Information & Support
A coalition of more than 40 charities, including SMA Support UK, is today urging an end to the postcode lottery in bereavement care for parents.
04 October 2017 / Posted in: Information & Support
Add your name to the DCP's letter calling on the Government to review the funding and availability of short breaks services.
02 October 2017 / Posted in: Our Community
Thank you to everyone who helped to make this Awareness Day campaign our biggest yet! Read the facts and figures here.
29 September 2017 / Posted in: Research
The request to include those with more than two SMN2 copies and over 7 months of age in the SMA Type 1 nusinersen EAP is not yet successful. We are still waiting to hear from NICE about next steps.
27 September 2017 / Posted in: Research
Novartis has released the following community update for the LMI070 (branaplam) clinical trial.