Latest News: Support

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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New Research Project for Adults who have SMA and Parents / Caregivers of those aged 2-18 years

11 October 2021 / Posted in: Information, Support

Liberating Research is looking to speak to people with SMA and caregivers / parents of people living with SMA, to understand better the everyday life experiences and needs of people affected by the condition. Everyone who participates will be paid £80 as a token of appreciation for their time. Closes 4th November.

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Mindfulness Mondays

23 September 2021 / Posted in: Information, Support

SMA UK are launching a new 6-week Mindfulness Monday programme for those in the SMA Community aged 18+. Starting on the 4th October, these live, drop-in style group sessions of 30 minutes every Monday lunchtime will be led by occupational therapist Josephine Dolan-Dufourd. Register for free here!

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MDUK Muscles Matter 2021 SMA (Paediatric Focus) Seminar: Watch Online

22 September 2021 / Posted in: Information, Support

On 23rd August, we were delighted to be on the panel presenting at Muscular DystrophyUK's Muscles Matter 21 Online Seminar. The session had a paediatric SMA focus, also featuring a panel of paediatric neurologists and physiotherapists, and is now available to watch online.

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SMA Matters - Autumn 2021

20 September 2021 / Posted in: Information, Support

Click here to view the latest edition of our SMA Matters newsletter, which includes our 2021 Christmas merchanise!

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Breaking Down Barriers - Rare Pride Project

15 September 2021 / Posted in: Information, Support

Breaking Down Barriers is starting the ‘Rare Pride’ project to seek experiences from those who have a rare condition and are part of the LGBTQIA+ community. Join them on Zoom on Tuesday 28th September at 6pm for their first get together and have your voice heard!

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