18 June 2018 / Posted in: Research
We have asked Biogen to keep us updated with this latest information as we all continue to advocate for broad access in the UK.
14 June 2018 / Posted in: Information & Support
Carers UK have information on their website and a free, downloadable guide on your right to request flexible working.
14 June 2018 / Posted in: Research
We have received the following update from Roche about the SUNFISH study, investigating RG7916 in people with SMA Types 2 or 3, which will now not be recruiting in the UK.
12 June 2018 / Posted in: Information & Support
After surveying nearly 4,000 adults of all ages who need care or who look after someone with care needs, the Care and Support Alliance (CSA) discovered that people are unable to get the basic care and support they need. Add your voice to their campaign and sign the petition.
08 June 2018 / Posted in: Research
Pharmaceutical company Scholar Rock has announced that dosing of the first cohort has been completed in a Phase I trial of the experimental drug, SRK-015.
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.