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.

Read full story

Find out about our fundraisers 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.

Read full story

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.

Read full story

Get Out There for SMA in 2019 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!

Read full story

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.

Read full story

Coffee and Cake Day 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

Read full story

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.

Read full story

Urgent request: short survey to assist with ongoing negotiations with NICE re access to nusinersen

17 December 2018 / Posted in: Treatments & Research

We are facilitating finding out more about the financial and work-related impact of living with SMA Type 1, 2, 3 or 4, for unpaid carers in the UK. This survey may be completed by the person with SMA, partners, parents / carers, or together. Closing date for the survey is 9am on Monday 7th January 2019.

Read full story

Roche's Risdiplam Granted PRIME Designation by EMA

17 December 2018 / Posted in: Treatments & Research

Roche have issued a media release confirming PRIME designation has been granted by the European Medicines Agency (EMA) for risdiplam (RG7916) for the treatment of SMA.

Read full story

Response from Biogen to Charities' Letter re Bridging Solution

14 December 2018 / Posted in: Treatments & Research

We have received a written response from Biogen to the joint charities' letter we sent on 29th November about the urgent need to set up a bridging solution for access to nusinersen.

Read full story