Latest News: Support

SMA UK call on the Government to rethink disabled children’s education and care SMA UK call on the Government to rethink disabled children’s education and care

09 May 2022 / Posted in: Information, Support

The letter, sent today (Monday 9th May) and written to Rt Hon Nadhim Zahawi and Rt Hon Sajid Javid, highlights concerns that some of the proposals in the paper will have the opposite effect to their stated intentions and may in fact restrict families with disabled children from accessing certain services and create barriers in an already challenging system.

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Help With Rising Energy Costs Help With Rising Energy Costs

05 May 2022 / Posted in: Information, Support

The impact is already biting for the SMA Community, many of whom find it hard to keep warm and who rely on energy to power essential equipment. We will be advocating for increased financial support to combat the hardship these rising costs bring. For the here and now, we've gathered information about possible help with increasing bills.

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Sign Contact's Open Letter to the Chancellor and Energy Minister about Energy Costs Sign Contact's Open Letter to the Chancellor and Energy Minister about Energy Costs

03 May 2022 / Posted in: Information, Support

National charity Contact have put together this open letter following research they've carried out with families of disabled children who expect to see their energy bills soar.

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MAC Report on Adult Social Care Published MAC Report on Adult Social Care Published

28 April 2022 / Posted in: Information, Support

The Migration Advisory Committee has published its report on adult social care, and the impact that ending freedom of movement has had on the sector. It provides recommendations on how to address issues the sector is experiencing. Read our update outlining how these address the asks in our campaign.

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Pathfinders Neuromuscular Alliance - Training for PAs Pathfinders Neuromuscular Alliance - Training for PAs

21 April 2022 / Posted in: Information, Support

Are you a PA for someone with a muscle-weakening condition? Or do you have a muscle-weakening condition yourself, and employ a team of PAs? Pathfinders Neuromuscular Alliance is excited to announce their new PA Training Programme funded by Skills for Care.

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SMA Matters - Spring 2022 SMA Matters - Spring 2022

12 April 2022 / Posted in: Information, Support

Please click here to read the latest edition of our SMA Matters newsletter - Spring 2022.

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Easter Bank Holiday Easter Bank Holiday

12 April 2022 / Posted in: Information, Support

Our office will be closed from 4pm on Thursday 14th April and will re-open from 8.30am on Tuesday 19th April. Find out more about where to find information and support during this time.

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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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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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