Tel: 01789 267520

Access to Psychological Support - Your Views

02 May 2018 / Posted in: Information & Support

Thank you to those of you who completed our surveys. We have forwarded the results and your comments to MDUK so that they can be incorporated into the report they are preparing for the APPG 6-month inquiry. To see the results of the surveys, or if you are seeking emotional support, please click here.

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Survey about Family Finances

24 April 2018 / Posted in: Information & Support

Contact is calling on family members who care for children and young people with additional needs or disabilities to take part in important research about family finances.

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2018 Porsche Muscle Dream Driving Experience Programme 2018 Porsche Muscle Dream Driving Experience Programme

19 April 2018 / Posted in: Our Community

Nominations are now open for the 2018 Porche Muscle Dream Driving Experience Programme! The Muscle Help Foundation is looking to invite 8 young people to join this exciting experience on 18th/19th June at Silverstone.

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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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SMC Nusinersen Decision Timeline

09 April 2018 / Posted in: Research

The Scottish Medicines Consortium (SMC) decision on whether it will recommend that the Scottish NHS funds nusinersen and, if so, for whom, will be published on the SMC website after 2pm on Monday 7th May.

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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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Nusinersen Treatment in Later Onset SMA - Results of the CHERISH Trial

28 March 2018 / Posted in: Research

In February 2018, the prestigious New England Journal of Medicine published the results of the Nusinersen trial known as the ‘CHERISH trial’. This was a study that looked at the effects of giving Nusinersen to 126 children with later onset SMA.

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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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Patient Presentation at the SMC PACE Meeting

19 March 2018 / Posted in: Research

Our thanks to two parents who shared their personal stories at the Scottish Medicines Consortium (SMC) Patient and Clinical Engagement (PACE) meeting. Their testimonies were very powerful and moving and we are very grateful to them for taking this on.

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