02 May 2018 / Posted in: Information & Support
Thank you to those of you who completed our surveys. We have forwarded the results and your comments to MDUK so that they can be incorporated into the report they are preparing for the APPG 6-month inquiry. To see the results of the surveys, or if you are seeking emotional support, please click here.
24 April 2018 / Posted in: Information & Support
Contact is calling on family members who care for children and young people with additional needs or disabilities to take part in important research about family finances.
19 April 2018 / Posted in: Our Community
Nominations are now open for the 2018 Porche Muscle Dream Driving Experience Programme! The Muscle Help Foundation is looking to invite 8 young people to join this exciting experience on 18th/19th June at Silverstone.
12 April 2018 / Posted in: Information & Support
We have a number of resources available here on our website that you may find helpful or of interest, including personal stories that mums with SMA have shared.
09 April 2018 / Posted in: Research
The Scottish Medicines Consortium (SMC) decision on whether it will recommend that the Scottish NHS funds nusinersen and, if so, for whom, will be published on the SMC website after 2pm on Monday 7th May.
03 April 2018 / Posted in: Information & Support
‘A checklist to a good transition’ joins their list of resources aimed at improving the experiences of young people moving from familiar children’s services into adult services.
29 March 2018 / Posted in: Information & Support
'Into Higher Education' is a guide for anyone with a health condition, learning difficulty or disability, thinking about studying in higher education starting September 2018.
28 March 2018 / Posted in: Research
In February 2018, the prestigious New England Journal of Medicine published the results of the Nusinersen trial known as the ‘CHERISH trial’. This was a study that looked at the effects of giving Nusinersen to 126 children with later onset SMA.
26 March 2018 / Posted in: Information & Support
Our office is closed from 3.30pm on Thursday 29th March 2018. We re-open on Tuesday 3rd April 2018 at 9.00am. For further information / support during this time, please click here to find out more.
19 March 2018 / Posted in: Research
Our thanks to two parents who shared their personal stories at the Scottish Medicines Consortium (SMC) Patient and Clinical Engagement (PACE) meeting. Their testimonies were very powerful and moving and we are very grateful to them for taking this on.