Motability - One Big Day Online
14 August 2020 / Posted in: Information, Support
Motability's 2020 One Big Day events have had to be cancelled due to Covid-19. However, on 10th September, they are hosting a One Big Day Online event through their Facebook page.
Share Your Views on Care Coordination for Rare Conditions
14 August 2020 / Posted in: Information, Support
Researchers at University College London are looking for participants for a study which looks at how care of people who have rare conditions is coordinated in the UK, and how patients and healthcare professionals who treat rare conditions would like them to be coordinated.
Webinar Recordings
12 August 2020 / Posted in: Information, Support
As part of Community Connections, leading health professionals talked with Martyn Sibley about the impact of Covid-19 on access to nusinersen treatment for children and adults, in three webinars held between July and August. You can now watch them on our website.
Data Breach
11 August 2020 / Posted in: Information
We've been advised by Blackbaud, that between Feb and May, a copy of the data we hold about people who have contact with us had been involved in the ransomware attack that affected many charities and organisations. Please be assured all copied data was destroyed before it could be passed on further or misused and that we have strict data security procedures.
Risdiplam Approved for the Treatment of SMA in the U.S.
10 August 2020 / Posted in: Treatments & Research
Roche has advised us, as members of SMA Europe, that the U.S. Food and Drug Administration (FDA) has approved risdiplam for the treatment of 5q SMA in adults and children 2 months of age and older. In the U.S., Risdiplam's brand name is Evrysdi™.
Distance Aware Campaign
07 August 2020 / Posted in: Information, Support
Distance Aware is an NHS initiative that has been established to explore the concept of polite prompting of social distancing, by means of self-identifying with a badge or similar. This is to help with increased anxiety of many who feel vulnerable, the virus still being present in our communities, and the shielding period coming to an end.
UK SMA Research Online Conference - Save the Date!
04 August 2020 / Posted in: Treatments & Research
Taking place on 10th & 11th September, a committee of UK-based PhD students have got together to organise this event with the aim of giving early career researchers an opportunity to present their work. Find out how to submit work for presentation and / or how to join the conference.
Disabled Motoring UK - Baywatch Survey 2020
04 August 2020 / Posted in: Information, Support
DMUK are asking individuals to think back over the last 12 months to consider their general parking experience - this data will help tackle the supermarkets and other parking providers over their disabled parking policies. Survey closes end of August.
Catalyst Pharmaceuticals Completes Enrolment for a Study of Amifampridine Phosphate in Ambulatory Patients who have SMA Type 3
03 August 2020 / Posted in: Treatments & Research
This biopharmaceutical company, focused on developing innovative therapies for people with rare debilitating neuromuscular and neurological diseases, is evaluating a neuronal potassium channel blocker, for the treatment of SMA.
Views Needed on Carer’s Leave
23 July 2020 / Posted in: Information, Support
The Government is currently running a consultation on their proposal to give working carers a week's unpaid Carer's Leave from work each year. It covers England, Wales, and Scotland and closes on 3rd August 2020. Find out how you can respond to the consultation.
