Below Standard: MDUK's Assessment of the Benefits System

28 February 2020 / Posted in: Information, Support

Muscular Dystrophy UK have launched a report which highlights the problems that people living with a muscle-wasting condition are experiencing with the benefits application, assessment and appeals process. They are calling on the Government to take action to address the failings of the benefits system and are asking you to share their report with your MP.

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SMA UK at the International Scientific Congress on SMA 2020

26 February 2020 / Posted in: Treatments & Research

This article summarises some of the key messages and findings from the 2nd International Scientific & Clinical Congress on SMA organised by SMA Europe and held in Evry, France from 5th-7th February 2020.

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Survey for All Adults who have 5q SMA (Types 1, 2 or 3) and Live in the UK

18 February 2020 / Posted in: Treatments & Research

To help with planning the roll-out of the nusinersen treatment programme, we want to hear from all adults who live in the UK and who have 5q SMA (Types 1, 2 or 3) to find out who does and who doesn’t want to access nusinersen (Spinraza) treatment. Survey closes 15th March.

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Walking the Great North Run for SMA UK Walking the Great North Run for SMA UK

14 February 2020 / Posted in: Help Us

Dot and Pat decided to walk the Great North Run last year

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Changing Places: Funding For Hospitals

07 February 2020 / Posted in: Information, Support

As of January 2020, £500,000 of the £2 million fund provided by the Department of Health and Social Care has now been allocated for 16 new Changing Places toilets being installed at hospitals. The rest of the fund is open to new applications from NHS Hospital Trusts in England.

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User Interviews re: the Redevelopment of the UK National Screening Committee Website

07 February 2020 / Posted in: Information, Support

Public Health England (PHE) Digital is conducting this research and is seeking volunteers to provide feedback. Those who take part will receive a £50 voucher to thank them for their time.

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Roche’s Risdiplam Showed Significant Improvement in Motor Function in People who have SMA Type 2 or 3

06 February 2020 / Posted in: Treatments & Research

Their SUNFISH trial showed change from the baseline in the primary endpoint of the Motor Function Measure scale was significantly greater in people treated with risdiplam, compared to the placebo. The Revised Upper Limb Module also showed an improvement.

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The Great North Run for Abigail The Great North Run for Abigail

30 January 2020 / Posted in: Help Us

Hazel is running the Great North Run this year in memory of Abigail.

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Roche’s Risdiplam Meets Primary Endpoint in pivotal FIREFISH Trial in Infants who have SMA Type 1

23 January 2020 / Posted in: Treatments & Research

Roche have put out a press release showing positive endpoint results from their FIREFISH study of risdiplam with infants aged 1-7 months who have SMA Type 1.

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New Survey Launched to Understand Activity Needs of Disabled Children

16 January 2020 / Posted in: Information, Support

The ukactive Research Institute has announced a three-year research project with national disability charity, Sense, to understand better the needs of parents and families of disabled children. Survey closes 15th March.

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