Latest News: Information

Easter Bank Holiday

08 April 2020 / Posted in: Information, Support

SMA UK staff won’t be working over the Easter Weekend - so will finish at the end of Thursday 9th April and will be back working at 9am on Tuesday 14th. Find out about where to find information, including re COVID-19, during this time.

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Action Taking Place to Address Concerns about NHS and Social Care Covid-19 Policies and Implications for the SMA and Wider Neuromuscular Community

06 April 2020 / Posted in: Information, Support

We are very aware of the concerns there have been, and still are, for all people who have neuromuscular / neurological conditions. Key organisations are voicing and working on these concerns with the Government organisations.

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Covid-9 Questions from the Community Answered by Neuromuscular Clinicians

30 March 2020 / Posted in: Information, Support

We have some SMA-focused advice on our website from a group of neuromuscular clinical experts who lead the adult and children’s NorthStar and SMA REACH clinical networks and work across a wide range of neuromuscular conditions. All the patient groups have been asking, and continue to ask, more detailed questions which we will update as Q&A pages.

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Our Supportive Board of Trustees

26 March 2020 / Posted in: Information, Support

We've had great support during these difficult days from our Trustees. They know our main focus is to provide information and support to the Community, but with fundraising events cancelled and everyone needing to look after their own needs first, they're also doing their best to help us plan round a massive drop in income and the impact this will have on our staff and capacity to keep going.

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Changes in Our Activities due to Covid-19

26 March 2020 / Posted in: Information, Support

Our key focus is to keep you up-to-date with information via our website pages and social media. Our Support Services team is here to support you and talk things through. The best way to contact us is via email or phone. We are picking up messages three times a day. Virtual networks continue. Many other activities have had to change.

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Planning for Access to Nusinersen – Survey of Adults, What Next

26 March 2020 / Posted in: Information, Treatments & Research, Support

Thanks to all who responded. You can see the ‘top line’ results here. We have forwarded summary information about who has asked for contact to the adult treatment centre network lead clinician. If you gave any personal details but asked for these not to be shared, these have not and will not be passed on.

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Survey Results Update from OpenVie on behalf of Roche

13 March 2020 / Posted in: Information, Treatments & Research, Support

Thank you to everyone who completed this survey. Read more about how they will use the data, including writing a report to share with UK Health Technology Agencies.

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SMA UK Family Meet-Up: South East Rearranged Due To Coronavirus

06 March 2020 / Posted in: Information, Support

Due to the escalation of COVID-19 coronavirus, we have taken the difficult decision to rearrange this event to Sunday 25th October. We hope to go ahead with our other planned events which are scheduled to take place later in the year.

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Day-to-Day Activities Survey for People who have SMA Type 2 or 3 and their Unpaid Parents / Carers

28 February 2020 / Posted in: Information, Support

This study is looking for a limited number of adults and parents / caregivers of teenagers or children to complete a 60-minute online survey. If you are eligible and fully complete the study, you will receive £100 compensation for your time.

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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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