Tel: 01789 267520

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.

Read full story

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.

Read full story

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!

Read full story

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.

Read full story

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!

Read full story

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.

Read full story

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.

Read full story

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.

Read full story

New Gene Therapy With Potential For SMARD

08 March 2017 / Posted in: Research

New pre-clinical research has shown the exciting potential of using viruses to treat Spinal Muscular Atrophy with Respiratory Distress (SMARD), a recessive motor neuron disease similar to SMA.

Read full story

Biogen update on the nusinersen EAP for those with SMA Type 1 in the UK

07 March 2017 / Posted in: Research

In response to our request for an update, Biogen has released this statement today.

Read full story