Latest News: Information

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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Newborn Screening Using Whole Genome Sequencing – Have Your Say by 14th June 2022 Newborn Screening Using Whole Genome Sequencing – Have Your Say by 14th June 2022

06 May 2022 / Posted in: Information, Treatments & Research

We’re expecting the NSC to begin its review of newborn screening this year. In parallel, Genomics England is running this survey to decide what principles should be used in future to choose conditions that will be screened for. This survey provides another route for the SMA Community to raise the importance of newborn screening for SMA.

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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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Researcher Training Programme for New Entrants to TV Researcher Training Programme for New Entrants to TV

11 April 2022 / Posted in: Information

Motion Content Group, with thinkBIGGER!, are offering an exciting new Researcher Training Programme aimed at new entrants with less than 3 months experience in TV. Applications close Friday 22nd April at 12pm.

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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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