Further Small Studies Support the Use of Nusinersen for SMA Treatment in Adults

03 July 2020 / Posted in: Treatments & Research

Three scientific reports have been published that present observations from adults who have SMA treated with repeated injections of nusinersen into the fluid bathing the spinal cord and brain.

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Over 150 Organisations Call on Government to Prioritise Children as Much as Health and the Economy

30 June 2020 / Posted in: Information, Support

The impact of the COVID-19 pandemic has been widespread, affecting everybody in the country, and, in particular, this generation of children face unprecedented threats to their childhoods and life chances. They deserve an unprecedented response.

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Cure SMA: Summit of Strength Webinars

30 June 2020 / Posted in: Information, Support

The American organisation have released some of the webinars from their Summit of Strength Virtual Program Series (a series of single-day educational events), with more being released in the coming weeks.

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Progress with Access to Nusinersen in European Countries for Adults who have SMA

25 June 2020 / Posted in: Treatments & Research

Thank you to the SMA Europe member countries who responded to our request for information about the reality of access to treatment by adults in their country. Some provided other information about access in general, and testimonials.

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Changes to Shielding Advice

25 June 2020 / Posted in: Information, Support

Following the Government's recent and prospective changes around shielding, we have been liaising with other neuromuscular charities and clinicians. Read more about the latest advice they've provided.

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SMA UK Virtual Quiz Night!

19 June 2020 / Posted in: Information, Support

As part of our Community Connections virtual meet-ups, we will be running our first ever SMA UK Quiz Night! It'll be taking place on Thursday 25th June at 8pm, so do join us and invite family and friends (18+years) to sign up too.

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Roche Presents New Data on SUNFISH & JEWELFISH Trials at the Cure SMA Annual 2020 virtual Conference

16 June 2020 / Posted in: Treatments & Research

Roche presented this new data at the virtual Cure SMA Annual Conference, which took place between 8th and 12th June.

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Further Positive Results in NURTURE Study with Pre-Symptomatic SMA Patients Treated with Nusinersen

12 June 2020 / Posted in: Treatments & Research

New results from the NURTURE study show that pre-symptomatic SMA patients treated with nusinersen continue to demonstrate sustained benefit from treatment.

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NICE / NHS England Answer the Patient Groups FAQS about Adults’ Access to Nusinersen Treatment in England

11 June 2020 / Posted in: Treatments & Research

NHS England and NICE have provided further responses to these FAQs, around adults' access to nusinersen, raised in August 2019 by the patient groups.

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Information Statement from the NHS England Clinical Panel for Nusinersen

11 June 2020 / Posted in: Treatments & Research

This is about access to the risdiplam Compassionate Use Programme for anyone who has SMA Type 1 or 2 who is already receiving nusinersen but who has had their treatment interrupted because of COVID-19.

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