Latest News: Support

Distance Aware Campaign

07 August 2020 / Posted in: Information, Support

Distance Aware is an NHS initiative that has been established to explore the concept of polite prompting of social distancing, by means of self-identifying with a badge or similar. This is to help with increased anxiety of many who feel vulnerable, the virus still being present in our communities, and the shielding period coming to an end.

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Disabled Motoring UK - Baywatch Survey 2020

04 August 2020 / Posted in: Information, Support

DMUK are asking individuals to think back over the last 12 months to consider their general parking experience - this data will help tackle the supermarkets and other parking providers over their disabled parking policies. Survey closes end of August.

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Views Needed on Carer’s Leave

23 July 2020 / Posted in: Information, Support

The Government is currently running a consultation on their proposal to give working carers a week's unpaid Carer's Leave from work each year. It covers England, Wales, and Scotland and closes on 3rd August 2020. Find out how you can respond to the consultation.

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Apply to Become a Trustee for SMA UK

21 July 2020 / Posted in: Information, Support

We’re looking for people with the skills and knowledge to take on this governance role - making sure that, as a charity, we are doing our best to respond to the needs of people in the SMA Community and are raising the income we need to do this. Applications close 20th September.

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Changing Places Compulsory for New Buildings in England from 2021

20 July 2020 / Posted in: Information, Support

Shopping centres, supermarkets, sports and arts venues will be required to include at least one Changing Place. There was also further funding announced for more Changing Places toilets at service stations in England.

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Face Masks for Children who have a Rare Condition

20 July 2020 / Posted in: Information, Support

The not-for-profit arts organisation Same But Different are giving these away free for children in the UK who have a rare condition.

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Impact of COVID-19 on Physical Activity and Wellbeing in Adults who have a Neurologically-Related Mobility Disability

16 July 2020 / Posted in: Information, Support

The University of Birmingham is running this survey to find about more about the impact that the pandemic has had on physical activity and health-related quality of life.

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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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