06 June 2018 / Posted in: Information & Support
Add your voice to this campaign calling on NHS commissioners in the West Midlands to provide life-saving cough assist machines to people with muscle-wasting conditions.
31 May 2018 / Posted in: Our Community
Follow the link to download the Spring 2018 edition of our SMA Matters (previously known as 'Inspirations') newsletter.
31 May 2018 / Posted in: Information & Support
Contact have a number of helpful podcasts available to listen to on their website. Their latest is by one of their helpline advisers who explains what happens when a young person who is on Disability Living Allowance turns 16.
30 May 2018 / Posted in: Research
Due to negative long-term effects, Roche have decided to halt further development of their drug olesoxime. They have provided this community statement.
25 May 2018 / Posted in: Research
This opens on 30th May and closes 13th June. The meeting will discuss access to nusinersen and be held in Manchester. We understand that there are only 30 places available.
24 May 2018 / Posted in: Help Us
Take part in a Shoesday with your clasSMAtes to help raise money and awareness of SMA! It's easy to do; pick a date, get everyone to wear odd shoes to school and donate to SMA Support UK.
23 May 2018 / Posted in: Research
On 16th May, the SMA charities wrote to leading managers of Biogen urging them to review their pricing and resubmit their application with the aim of Spinraza access being extended to those with SMA Types 2 and 3. Read Biogen's response.
22 May 2018 / Posted in: Research
You can now read the new recommendations as to what assessments and interventions families should expect to find in any neuromuscular centre. A family-friendly version is being worked on now.
16 May 2018 / Posted in: Research
Today, we have written to leading managers of Biogen about the SMC's decision that due to pricing, nusinersen may only be accessed by those with SMA Type 1. We are urging Biogen to review their pricing and resubmit their application with the aim of access being extended to those with SMA Types 2 and 3.
14 May 2018 / Posted in: Research
Biogen, has recently announced an investment of £450,000 over 3 years to further facilitate and accelerate the ability to bring together the current databases and to expand the programme to include more UK centres.