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Latest News: Information

Notice For Members

19 July 2016 / Posted in: Information

A reminder that the deadline for new Trustee nominations is the 31st July 2016 at 5pm. Please contact us should you require any additional forms by emailing

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Sharing Experiences

07 July 2016 / Posted in: Information

In reviewing the value and importance of our Peer Support Service in its widest sense, we’re introducing a new (and hopefully clearer) umbrella term of ‘Sharing Experiences’. This will bring together our Peer Support Service and additional opportunities for being in touch with others.

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Updated Information Sheet

06 July 2016 / Posted in: Information

We have updated our information sheet: 'Leisure Activities for Children and Young People with Spinal Muscular Atrophy'. This lists some of the many organisations that enable people with disabilities, including SMA, to participate in leisure activities.

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SMA Medical Guidance For DWP Staff

05 July 2016 / Posted in: Information

We have been in contact with the DWP to ask what information they use to make decisions for Disability Living Allowance (DLA) and for Attendance Allowance (AA).

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Kidz to Adultz Wales

20 June 2016 / Posted in: Information

One of the largest, free UK exhibitions dedicated to children & young adults with disabilities and additional needs, their families and the professionals who support them. Taking place Thursday 7th July.

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Campaign To Increase Carer’s Allowance Earnings Threshold

09 June 2016 / Posted in: Information

Contact a Family is asking people to sign an open letter calling on the government to make this increase to stop carers losing out on support.

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Focus on Disability Benefits

08 June 2016 / Posted in: Information

This hard-hitting report, just published by Muscular Dystrophy UK, warns that welfare assessments are thoroughly inadequate for people with progressive conditions.

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Scoliosis Surgery Survey

03 June 2016 / Posted in: Information

As part of Ben Owen's A Levels, he is doing a project on scoliosis surgery and how it improves/worsens quality of life. He is looking for anyone who has ever had scoliosis surgery to complete his survey - closing date is 31st August 2016.

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Events Taking Place In June Across The UK

03 June 2016 / Posted in: Information

There are a number of information, support and social events taking place across the UK during June including: Disability Adventure Weekend, RISE 4 Disability (event for healthcare professionals) and the Lions FunFest.

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Survey of your views on the ethical issues raised by non-invasive prenatal testing (NIPT)

01 June 2016 / Posted in: Information

The Nuffield Council on Bioethics is seeking people’s views and has also called for evidence. The survey is open now and closes on 25th July.

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