NICE announce Committee Meeting on 6th March 2019
01 February 2019 / Posted in: Treatments & Research
This will be the third meeting to review whether NICE will recommend nusinersen for funding by NHS England. This meeting will be in Manchester again. As soon as we have more details we will let you know.
MDUK's Benefits and Grants Survey
31 January 2019 / Posted in: Information, Support
Muscular Dystrophy UK's ‘Focus on Disability Benefits’ campaign aims to ensure that people with neuromuscular conditions can access fair and informed assessments for support that meets their needs. This survey is about your experience of the application process for any benefits you receive.
Ask Your MP to Speak in Debate on Support for Children with Life-limiting Conditions
24 January 2019 / Posted in: Information, Support
Together for Short Lives are asking people to write to their MPs to ask them to speak in this debate. The meeting will take place at 9:30am on Tuesday 29 January 2019 in Westminster Hall.
New Campaign: Make Cervical Cancer Screening Accessible For Disabled Women
24 January 2019 / Posted in: Information, Support
Fiona Anderson, a wheelchair user who has a muscle-wasting condition, has set up a petition to ensure disabled women have equal access to cervical cancer screening - this includes by making hoists available at every NHS medical centre.
Find out about our fundraisers
24 January 2019 / Posted in: Help Us
Some of our Fundraising Teams and Fund Holders have been sharing their thoughts with us on their experiences of fundraising for SMA.
Online Survey for Paediatric Physios re SMA
18 January 2019 / Posted in: Information, Support
This international research will give a better understanding of how physical therapy services are provided to those with SMA and will help give further information about issues that may be relevant to improving the education around this. Closes 1st March.
Get Out There for SMA in 2019
07 January 2019 / Posted in: Help Us
If you are thinking of taking part in a sponsored event for SMA we have updated our events pages with 2019 dates and inspiration!
Trailblazers Body Image Survey
07 January 2019 / Posted in: Information, Support
Trailblazers want to hear from young, disabled people about how they feel about their 'body image'. By this, they mean how individuals feel about the way they look and how this affects confidence, self-esteem and mental wellbeing.
Coffee and Cake Day
04 January 2019 / Posted in: Help Us
Beat the Winter Blues by getting friends and family together for some delicious bakes
CQC Survey: People's Experiences of Care
04 January 2019 / Posted in: Information
The Care Quality Commission is running a survey to find out people's different experiences of care. By sharing your experiences, you’ll help them to improve the overall quality of care in England.
