Latest News: Support

Cure SMA: Summit of Strength Webinars

30 June 2020 / Posted in: Information, Support

The American organisation have released some of the webinars from their Summit of Strength Virtual Program Series (a series of single-day educational events), with more being released in the coming weeks.

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Over 150 Organisations Call on Government to Prioritise Children as Much as Health and the Economy

30 June 2020 / Posted in: Information, Support

The impact of the COVID-19 pandemic has been widespread, affecting everybody in the country, and, in particular, this generation of children face unprecedented threats to their childhoods and life chances. They deserve an unprecedented response.

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Changes to Shielding Advice

25 June 2020 / Posted in: Information, Support

Following the Government's recent and prospective changes around shielding, we have been liaising with other neuromuscular charities and clinicians. Read more about the latest advice they've provided.

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SMA UK Virtual Quiz Night!

19 June 2020 / Posted in: Information, Support

As part of our Community Connections virtual meet-ups, we will be running our first ever SMA UK Quiz Night! It'll be taking place on Thursday 25th June at 8pm, so do join us and invite family and friends (18+years) to sign up too.

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Contact: Petition for a Carers COVID-19 Payment

03 June 2020 / Posted in: Information, Support

This payment would help with some of the extra costs many are facing due to the pandemic but would importantly also send a message from Government to unpaid carers that they are valued at this difficult time.

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New Survey from Together For Short Lives

02 June 2020 / Posted in: Information, Support

This survey is designed to gather the experiences and views of parents / carers of children (aged 0-25 years) who have a life-limiting condition, in relation to how COVID-19 is affecting them.

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New Survey: Parent’s Seeking Help for, and Care of, a Sick or Unwell Child During COVID-19 ‘Stay at Home’ Period

28 May 2020 / Posted in: Information, Support

The University of Plymouth has launched this survey as it's hoped the results will advance understanding of how these extraordinary times are affecting parents' thinking about, and perception of, access to services for children when they are sick or unwell.

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Invitation to Join Study: Experiences of Living With, or Caring for Someone who has, SMA

21 May 2020 / Posted in: Information, Support

A healthcare market research company working for a research client and pharmaceutical company wants to understand patient and caregiver journeys and any treatment routines. Participants will be paid £35 for each completed survey, with 10% donated to one of the company's registered charities. Registrations of interest close 29th May.

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Do you live with a neuromuscular condition and experience swallowing difficulties, or care for someone who does?

18 May 2020 / Posted in: Information, Support

If so, please consider sharing your experiences by completing an online survey led by a specialist team at The National Hospital for Neurology and University College London. Survey closes 26th July.

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International Research Survey: Coronavirus

14 May 2020 / Posted in: Information, Support

A collaboration of international researchers, including researchers from University College London, are interested in how the current coronavirus pandemic is affecting disabled people and their families.

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