Get Involved! PROMs to be Collected by UK SMA Patient Registry Get Involved! PROMs to be Collected by UK SMA Patient Registry

08 April 2022 / Posted in: Information, Support

If you’re an adult who has SMA or parent of a child who has SMA, it’s essential that your feedback about the impact of your SMA, and how any treatment may be changing this, is captured. When NICE reviews the MAAs and considers whether to recommend continued funding for nusinersen and risdiplam, this will be part of the evidence. Sign up for the SMA Patient Registry today and take part!

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SMA UK and MDUK to Fund a Four Year PhD Studentship in SMA Research SMA UK and MDUK to Fund a Four Year PhD Studentship in SMA Research

01 April 2022 / Posted in: Treatments & Research

We're delighted to be continuing our partnership with MDUK to fund jointly this research which has been awarded to Dr Lyndsay Murray of the University of Edinburgh.

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PA Training – Host and Facilitator Roles PA Training – Host and Facilitator Roles

29 March 2022 / Posted in: Information, Support

The Pathfinders Neuromuscular Alliance are planning to run three online training conferences for PAs, for which registration will open soon. They're keen to ensure that these online training courses are led by people with muscle-weakening conditions and so are looking for paid freelance hosts and facilitators.

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The SPARK project: New National Study on Emotional and Spiritual Care The SPARK project: New National Study on Emotional and Spiritual Care

29 March 2022 / Posted in: Information, Support

Living with a serious medical condition can affect emotional and spiritual needs in lots of different ways. Researchers are doing a study which will develop recommendations for the NHS on how best to meet these needs. One of the groups involved in the project are parents of children (0-18 years) with SMA Type 1 or 2.

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National Siblings Day - 10th April 2022 National Siblings Day - 10th April 2022

25 March 2022 / Posted in: Information, Support

This year's theme is #ItsASiblingThing, and national charity Sibs, who are running the day, have lots of different ways families and individuals can get involved, including art sessions for children and support groups for adults.

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More than 500 New Changing Places Toilets to be Built Across England More than 500 New Changing Places Toilets to be Built Across England

24 March 2022 / Posted in: Information

This positive announcement comes following the allocation of £23.5m worth of funding from the Department of Levelling Up, Housing and Communities to 191 councils across England.

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Contact Survey: Tell Us About Your Extra Energy Costs Contact Survey: Tell Us About Your Extra Energy Costs

24 March 2022 / Posted in: Information, Support

National charity Contact is campaigning on a range of measures aimed at helping families with their higher energy bills, but they need your help to make a stronger case for change with government and energy companies. Share your views in their survey.

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#ItsNotJustCare Campaign #ItsNotJustCare Campaign

23 March 2022 / Posted in: Information, Support

The crisis in care is not a new topic and the pandemic certainly brought its own problems. But there are other causes that the government have overlooked in their ‘Made with Care campaign’. As we see it, the inability to recruit reliable PAs has three primary causes. If these issues are affecting you, or somebody you know we encourage you to write to your MP using our template letter.

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Rare Disease Day 2022 Rare Disease Day 2022

22 March 2022 / Posted in: Information, Support

Another hugely successful day for this annual event, with families, individuals and organisations joining in all over the world. There were lots of ways SMA UK and the SMA Community got involved in the day.

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Say Hello To Lucy! Say Hello To Lucy!

22 March 2022 / Posted in: Information

We're delighted to welcome Lucy to the SMA UK team as Head of Communications & Fundraising! She introduces herself here and explains a bit more about her background and experience.

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