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Fundraising Night for SMA Support UK Fundraising Night for SMA Support UK

05 April 2017 / Posted in: Help Us

Molly Davies and her friends at Birmingham City University recently held a fundraising night for SMA Support UK, with live music and a raffle.

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AveXis announce results from AVXS-101 Phase I trial

05 April 2017 / Posted in: Research

AveXis has released results from the completed Phase I trial of their gene therapy drug for SMA, AVXS-101.

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Government Urged to Re-think its Proposed Changes to the HST Programme

29 March 2017 / Posted in: Research

SMA Support UK will today join Genetic Alliance UK and MDUK at the All Party Parliamentary Group for Muscular Dystrophy which NICE will also attend.

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The D4D Project

28 March 2017 / Posted in: Research

A workshop is taking place in London in January for people with a lived experience of genetic conditions as part of a new research project.

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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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Kelly and Jason's Fundraising Story Kelly and Jason's Fundraising Story

23 March 2017 / Posted in: Help Us

Kelly and Jason's daughter, Lily-Mae, had SMA and sadly passed away in 2011. They share their story here, explaining why they continue to raise funds and awareness of Spinal Muscular Atrophy.

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Workplace Coffee and Cake Day for SMA Support UK! Workplace Coffee and Cake Day for SMA Support UK!

21 March 2017 / Posted in: Help Us

Ivo, whose daughter has SMA Type 2, held a workplace Coffee and Cake Day for SMA Support UK and raised over £200!

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Nusinersen Expanded Access Programme - What You Can Do To Help

17 March 2017 / Posted in: Research

Our current focus is on trying to get NHS England to agree a potential commissioning framework to support the provision of this new and first treatment for SMA. Find out how you can support these efforts by contacting your local MP with this template letter.

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Coffee & Cake and Dress Down Day for SMA Support UK! Coffee & Cake and Dress Down Day for SMA Support UK!

17 March 2017 / Posted in: Help Us

We would like to say a big thank you to Sue Johnson and her colleagues at Lloyds Private Banking in Haywards Heath for raising an amazing £700!

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WellChild Awards 2017 WellChild Awards 2017

09 March 2017 / Posted in: Our Community

Do you know a seriously ill child, young person or caring professional that inspires those around them? Why not nominate them for a 2017 WellChild Award. Closing date for nominations is the 1st May 2017.

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