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.
07 March 2017 / Posted in: Research
In response to our request for an update, Biogen has released this statement today.
02 March 2017 / Posted in: Help Us
A Pancake Day recently held by Amy Cameron raised a whopping £245! We would like to say a big thank you to Amy and all her family and friends who got involved.
02 March 2017 / Posted in: Research
The charities shared a stall at Royal Holloway’s annual Rare Disease Day event on February 24th.
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).
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.
10 February 2017 / Posted in: Information & Support
Contact a Family have launched their biggest inquiry into school transport for disabled children, and they want to hear from you. Take part in their survey to share your experiences, both positive and negative.
10 February 2017 / Posted in: Our Community
Charlie contacted us wanting to become more involved with SMA Support UK and offering to volunteer his services. We suggested he might like to start by sharing some of his many and varied experiences.