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. There is widespread concern that the proposed changes – set to come into force from 1st April – could slow down or prevent patient access to drugs for rare diseases, such as SMA.
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.
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.
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!
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.
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!
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.
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.
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.
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.