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Latest News: Information & Support

How important is it for people affected by SMA to have access to psychological support? Have your say by 27th April

13 April 2018 / Posted in: Information & Support

We want to make sure the views of people affected by SMA are heard by the APPG for MD which is conducting a 6-month inquiry assessing the need for, and availability of, psychological support for people affected by muscle wasting conditions. If you have SMA, are a relative / partner of someone with SMA or have been bereaved by SMA, please complete one of our surveys.

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Do you have SMA? Are you thinking about having children now or in the future?

12 April 2018 / Posted in: Information & Support

We have a number of resources available here on our website that you may find helpful or of interest, including personal stories that mums with SMA have shared.

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New Resource From Together For Short Lives

03 April 2018 / Posted in: Information & Support

‘A checklist to a good transition’ joins their list of resources aimed at improving the experiences of young people moving from familiar children’s services into adult services.

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Disability Rights UK Guide: Into Higher Education

29 March 2018 / Posted in: Information & Support

'Into Higher Education' is a guide for anyone with a health condition, learning difficulty or disability, thinking about studying in higher education starting September 2018.

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Information and Support over Easter

26 March 2018 / Posted in: Information & Support

Our office is closed from 3.30pm on Thursday 29th March 2018. We re-open on Tuesday 3rd April 2018 at 9.00am. For further information / support during this time, please click here to find out more.

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Petition to Close School Transport Loophole

19 March 2018 / Posted in: Information & Support

Contact have found that more and more disabled children are being refused school transport or being charged for it, as councils exploit a loophole in the law. They are calling on the government to close this loophole.

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Trailblazers to Host First Employability Boot Camp

15 March 2018 / Posted in: Information & Support

This fully-funded weekend, being held in London on 19th and 20th May, focuses on the challenges facing young disabled people looking for work. There's also an evening social for people to meet up.

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Improving Transitions for Young People Fund

01 March 2018 / Posted in: Information & Support

This fund is Together for Short Lives' ground-breaking funding programme which seeks to address the cliff edge in care experienced by young adults in their transition from children’s to adult services. Applications now open for organisations across the UK.

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Your Views on the Need for Access to Emotional and Psychological Support

16 February 2018 / Posted in: Information & Support

This is a vital element of support for individuals and families to manage and cope with muscle-wasting conditions. The All Party Parliamentary Group (APPG) for MDUK's new inquiry into access to psychological support is now taking evidence. You can give your views.

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Information, Support & Social Weekend April 2018

15 February 2018 / Posted in: Information & Support

We have been delighted with the response to this event, however, this does now mean that we are completely full to capacity for the whole weekend so any further booking requests we take will go on a waiting list.

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