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.

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Apply to Become a Trustee for SMA UK

21 July 2020 / Posted in: Information, Support

We’re looking for people with the skills and knowledge to take on this governance role - making sure that, as a charity, we are doing our best to respond to the needs of people in the SMA Community and are raising the income we need to do this. Applications close 20th September.

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Biogen to Initiate Phase 4 Study Evaluating Benefit of Spinraza® in Patients Treated With Zolgensma®

21 July 2020 / Posted in: Treatments & Research

Biogen have announced today that it plans to initiate this clinical study, called RESPOND, to examine the clinical benefit, and assess the safety, of Spinraza in infants and children who have SMA, who still have unmet clinical needs following treatment with the gene therapy treatment Zolgensma.

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Changing Places Compulsory for New Buildings in England from 2021

20 July 2020 / Posted in: Information, Support

Shopping centres, supermarkets, sports and arts venues will be required to include at least one Changing Place. There was also further funding announced for more Changing Places toilets at service stations in England.

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Face Masks for Children who have a Rare Condition

20 July 2020 / Posted in: Information, Support

The not-for-profit arts organisation Same But Different are giving these away free for children in the UK who have a rare condition.

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Impact of COVID-19 on Physical Activity and Wellbeing in Adults who have a Neurologically-Related Mobility Disability

16 July 2020 / Posted in: Information, Support

The University of Birmingham is running this survey to find about more about the impact that the pandemic has had on physical activity and health-related quality of life.

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Our Thanks to our Retiring Trustees

16 July 2020 / Posted in: Information

Our July board meeting saw a number of changes to the composition of our Board of Trustees, including 3 members stepping down - we'd like to thank them for their tireless and dedicated support, their advocacy for our cause, as well as their wisdom and counsel.

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NICE to discuss Zolgensma at 8th October Committee meeting

14 July 2020 / Posted in: Treatments & Research

Onasemnogene abeparvovec (Zolgensma) has been rescheduled into the National Institute for Health and Care Excellence’s (NICE’s) work programme and is due to be discussed at committee on this date

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European consensus statement concerning treatment with Zolgensma

13 July 2020 / Posted in: Treatments & Research

A group of prominent European neuromuscular experts have provided eleven consensus statements covering many aspects of treatment with onasemnogene abeparvovec (Zolgensma).

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Effect of risdiplam on Female Fertility and Menstruation

10 July 2020 / Posted in: Treatments & Research

Roche has responded to the question we asked on behalf of the Community about this.

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