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Latest News: Information & Support

SMA Type 3 and Me - New Book Publication

09 May 2017 / Posted in: Information & Support

Explaining SMA and why it happens is quite difficult. This book is aimed at children aged 8 and over but it can also be read to a younger child, be used in schools or when explaining SMA to friends.

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Children's Hospice Week 22nd-28th May 2017

04 May 2017 / Posted in: Information & Support

This year, Together for Short Lives will be turning up the volume on children’s palliative care to raise awareness. Find out how you can get involved.

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New SMA Voices: Maddison

03 May 2017 / Posted in: Information & Support

Lidia, Maddison's mum, shares their family's thoughts and experiences in this SMA Voices piece about Maddison who was diagnosed with SMARD at 9 months and is now 8 years old.

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Wanted - Your Feedback!

27 April 2017 / Posted in: Information & Support

​Calling all individuals, families and professionals. Please tell us what you think about current services and give your thoughts on our future direction in our survey. Closing date for responses is 5pm on Friday 26th May 2017.

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New SMA Voices: Ross

12 April 2017 / Posted in: Information & Support

Ross Lannon is 23 years old and has Spinal Muscular Atrophy Type 2. He has written an SMA Voices for our website that describes his recent trip to the Calvert Trust in Exmoor with a group of friends.

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SMARD Route Map Published

28 March 2017 / Posted in: Information & Support

This resource gives a summary of support services and resources available in the UK for families. It is based on the issues, concerns and personal experience of parents with contributions from health and social care professionals.

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Housing for Disabled People: Have Your Say

09 March 2017 / Posted in: Information & Support

The Equality and Human Rights Commision want to hear from disabled people to understand whether the availability of accessible and adaptable housing, and the support services around it, fulfils disabled people’s rights to live independently. Closing date is Tuesday 18 April 2017.

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Contestants Wanted For A Brand New BBC Show

08 March 2017 / Posted in: Information & Support

Hindsight Productions is looking for a diverse range of contributors from around the UK to take part in a brand new BBC show called 'Letterbox'. Closing date for applications is 31st March.

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Nuffield Council on Bioethics: NIPT Report

01 March 2017 / Posted in: Information & Support

The Nuffield Council on Bioethics today has launched its new report 'Non-invasive prenatal testing: ethical issues' which explores the ethical issues raised by non-invasive prenatal testing (NIPT).

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Maximising Your Income

13 February 2017 / Posted in: Information & Support

Having SMA, or having a child with SMA, can have financial implications so it is important to ensure you are receiving all the benefits and services you are entitled to. There are several organisations that may be able to help with this.

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