Latest News: Information

Survey For Young People with Neuromuscular Conditions About Fatigue

03 December 2021 / Posted in: Information

A trainee clinical psychologist at the University of Bath is running this survey about fatigue for young people in the UK (aged 10-24 years) who have neuromuscular conditions. The survey takes approximately 20-30 minutes to complete and there is also an optional prize draw for participants to enter.

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Study with Caregivers of People with SMA

23 November 2021 / Posted in: Information

Evolve is running this study, recruiting caregivers of people with Spinal Muscular Atrophy (SMA) Types 1, 2 or 3, on behalf of Novartis Gene Therapies. The goal is to collect data regarding the use of resources linked to the management of SMA from the perspective of caregivers, as well as time spent caring for patients and any financial impact. Participants will be paid £50 for their time.

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Research Project: Participation of Children in the Decisions about their Health

15 November 2021 / Posted in: Information

Radoš Keravica is conducting this PhD research project at the Centre of Disability Studies, University of Leeds, on disabled children’s participation in healthcare decision-making. All participants will receive a £20 shopping voucher as a thank you for their time.

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UK Rare Diseases Framework Questionnaire

09 November 2021 / Posted in: Information

The aim of this questionnaire from the Department of Health & Social Care is to gather feedback from the community on the draft actions that have been developed for inclusion in England’s 2022 action plan for the UK Rare Diseases Framework. Closes 5pm on 26th November.

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We're Hiring! Support Services Lead Job Role

02 November 2021 / Posted in: Information

We’re looking for a Support Services Lead! The successful candidate for this exciting role will lead the delivery of our Support Service workstreams that assist families & adults affected by SMA, and the professionals who support them. Applications close 30th November.

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What’s Happening About Newborn Screening for SMA in the UK?

28 October 2021 / Posted in: Information, Treatments & Research, Support

The short answer is there is a lot of ‘behind the scenes’ activity and that SMA UK is very much part of this. You can expect to hear more in the very near future. In the meantime, we've put together this brief summary which updates you on the activity so far.

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Change 100: Summer 2022 Paid Internships

28 October 2021 / Posted in: Information, Support

Change 100 is Leonard Cheshire's flagship programme of paid summer work placements, professional development and mentoring. It aims to remove barriers experienced by disabled people in the workplace, to allow them to achieve their potential. Applications are now open! You have until 12pm on 6 January 2022 to apply.

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Support #MyNeuroSurvey and Help Improve Neuro services

25 October 2021 / Posted in: Information, Support

Getting the right care, treatment and support at the right time can make a life-changing difference when you have a neurological condition. Share your experiences in the My Neuro Survey and help improve care for people with neurological conditions across the UK.

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New Survey: Being a Teenager With SMA

21 October 2021 / Posted in: Information, Support

Are you aged 13-18? Do you have a diagnosis of SMA? Jordanne has SMA Type 2 and is currently studying a master's degree in clinicial psychology. She's interested to hear more about how SMA affects the emotions and quality of life of people aged 13-18 years.

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Online Event: Newborn Screening: "What Should Be Screened For and How?"

14 October 2021 / Posted in: Information, Treatments & Research, Support

Recently, patient groups and others have asked for conditions, including SMA, to be added to the nine that are currently screened for in newborns, but this has not been done. This event, on 3rd Nov, will see the Director of Programmes for the UK National Screening Committee, and other experts and advocates, discuss what should be screened for in newborns and how.

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