As part of a PhD project, the John Walton Muscular Dystrophy Research Centre in Newcastle are conducting a survey to explore access to Standards of Care for people with Spinal Muscular Atrophy (SMA). They have asked us to spread the…
This information is provided in response to a series of questions shared jointly with Roche in writing by UK patient organisations Muscular Dystrophy UK (MDUK), TreatSMA and SMA UK. Unless otherwise stated this information applies to people living across the UK.
We currently have limited information but we wanted to get news out to you as soon as possible. The MHRA have approved the use of risdiplam for type 1 and type 2 patients over the age of two months with no upper age limit.
George and Lucy were featured in this week’s Sunday Mail, one of the largest newspapers and websites in the world reminding everybody about the benefits of treatment and that TreatSMA continues to publicise and fight for treatments to be available.
In this webinar we were joined by the charity SpecialEffect who specialise in providing assistive technology to those who are unable to use standard gaming controllers and so forth to help get them back into the world of computer gaming.
In this webinar we had the pleasure of being joined by Dr Giovanni Baranello who is a senior Clinical Lecturer in Neurosciences at Great Ormond Street Hospital as well as a Clinical Lecturer in Paediatric Neurology and Neuromuscular Disorders at…
In this video we got to see Andi attempting to use the Jaco robotic arm. An amazing piece of technology that has been around for some time now and gives those who are unable to use their arms effectively the freedom to be able to pick up items, open doors, pickup glasses of water (and beer of course) as well as a whole host of other things.