Latest News: Information
21 September 2016 / Posted in: Information
In this SMA Voices, Finlay's parents share their thoughts, feelings and experiences about their son who had SMA Type 1 and sadly died last year.
20 September 2016 / Posted in: Information
In our latest SMA Voices story, Esther Fox, artist, and Felicity Boardman, researcher, ask all of us to consider the wide ranging implications that pre-natal genetic screening would have if it were more widely available.
16 September 2016 / Posted in: Information, Treatments & Research
Principle Investigators in London and Newcastle have released this statement.
07 September 2016 / Posted in: Information
This is your opportunity to have a say on disabled people's rights under the United Nations Convention on the Rights of Persons with Disabilities.
25 August 2016 / Posted in: Information
Following discoveries made by Disability United's Editor, Fleur Perry, a petition has been launched to make sure that all disabled people can have the adaptations they need.
19 August 2016 / Posted in: Information
The Adult Onset SMA Route Map has been published! It has been written for individuals, families and professionals and it contains information on health, sources of support, and daily living topics.
16 August 2016 / Posted in: Information
This leaflet shares the experiences of families whose child with Spinal Muscular Atrophy has died. They talk about their personal experience of grief and how they cope with bereavement.
26 July 2016 / Posted in: Information
Mia watched a video talk by Stella Young. It got her thinking and prompted the 14 year old to share her own thoughts and reflections with us.
22 July 2016 / Posted in: Information
Luke is 15 years old and in year 10 at school. He recently did a week’s work experience at a police station in Gloucester and spoke to SMA Support UK about how it went.
21 July 2016 / Posted in: Information
The Department for Work and Pensions has appointed Paul Gray to undertake the second independent review of the Personal Independence Payment (PIP) assessment. This consultation closes 6 September 2016 5:00pm.