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First Cohort Dosing Completed in SRK-015 Phase 1 Clinical Trial

08 June 2018 / Posted in: Treatments & Research

Pharmaceutical company Scholar Rock has announced that dosing of the first cohort has been completed in a Phase I trial of the experimental drug, SRK-015.

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SMA Matters Spring 2018

31 May 2018 / Posted in: Support

Follow the link to download the Spring 2018 edition of our SMA Matters (previously known as 'Inspirations') newsletter.

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Helpful Podcasts

31 May 2018 / Posted in: Support

Contact have a number of helpful podcasts available to listen to on their website. Their latest is by one of their helpline advisers who explains what happens when a young person who is on Disability Living Allowance turns 16.

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Roche Community Update: Olesoxime

30 May 2018 / Posted in: Treatments & Research

Due to negative long-term effects, Roche have decided to halt further development of their drug olesoxime. They have provided this community statement.

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Registration for the Public Gallery for the 27th June NICE Committee meeting

25 May 2018 / Posted in: Treatments & Research

This opens on 30th May and closes 13th June. The meeting will discuss access to nusinersen and be held in Manchester. We understand that there are only 30 places available.

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Shoesday 2018 Shoesday 2018

24 May 2018 / Posted in: Help Us

Take part in a Shoesday with your clasSMAtes to help raise money and awareness of SMA! It's easy to do; pick a date, get everyone to wear odd shoes to school and donate to SMA Support UK.

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Biogen's Response to Charities' Letter

23 May 2018 / Posted in: Treatments & Research

On 16th May, the SMA charities wrote to leading managers of Biogen urging them to review their pricing and resubmit their application with the aim of Spinraza access being extended to those with SMA Types 2 and 3. Read Biogen's response.

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New International Standards of Care for SMA

22 May 2018 / Posted in: Treatments & Research

You can now read the new recommendations as to what assessments and interventions families should expect to find in any neuromuscular centre. A family-friendly version is being worked on now.

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Charities Send Joint Letter to Biogen

16 May 2018 / Posted in: Treatments & Research

Today, we have written to leading managers of Biogen about the SMC's decision that due to pricing, nusinersen may only be accessed by those with SMA Type 1. We are urging Biogen to review their pricing and resubmit their application with the aim of access being extended to those with SMA Types 2 and 3.

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What’s Happening with UK SMA Patient Databases?

14 May 2018 / Posted in: Treatments & Research

Biogen, has recently announced an investment of £450,000 over 3 years to further facilitate and accelerate the ability to bring together the current databases and to expand the programme to include more UK centres.

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