Living With SMA Podcast - Episode #16 Living With SMA Podcast - Episode #16

18 March 2022 / Posted in: Information, Support

What is it like to be a PA? What can we do to attract more people to the profession? Meet Michaela, Luis and Katy who share their own personal experiences and individual stories, talking about PAs, in the latest episode of our Living With SMA podcast.

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Biogen develops BIIB115, a potential new treatment for SMA Biogen develops BIIB115, a potential new treatment for SMA

18 March 2022 / Posted in: Treatments & Research

Biogen has shared a community update to announce that they are moving ahead with an early-stage investigation into this new treatment for SMA that could potentially treat further unmet needs.

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New Data for Roche’s Evrysdi (risdiplam) Demonstrate Long-Term Efficacy & Safety in a Broad Population of People who have SMA New Data for Roche’s Evrysdi (risdiplam) Demonstrate Long-Term Efficacy & Safety in a Broad Population of People who have SMA

17 March 2022 / Posted in: Treatments & Research

The latest risdiplam (Evrysdi) data updates were presented virtually at the 2022 MDA Clinical and Scientific Conference on 13th - 16th March.

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Online Focus Group re: Progressive Neurological Conditions in Northern Ireland Online Focus Group re: Progressive Neurological Conditions in Northern Ireland

16 March 2022 / Posted in: Information, Support

Researchers at Ulster University would like to hear about your experiences trying to access rehabilitation. Your voice is important and can contribute to making a positive change to rehabilitation services. The closing date for recruitment of participants is 30th April 2022.

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Roche Community Update re Ukraine Roche Community Update re Ukraine

15 March 2022 / Posted in: Treatments & Research

Roche has provided a community update, which we've received via SMA Europe, about the work they’ve been doing to understand better the situation in Ukraine and the impact on the SMA Community.

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First UK Pilot Study of Newborn Screening for SMA Launched in Oxford First UK Pilot Study of Newborn Screening for SMA Launched in Oxford

11 March 2022 / Posted in: Treatments & Research

This population-based newborn screening study aims to make it possible to detect SMA within days of birth, before symptoms develop, so that any affected newborn can receive diagnosis and treatment at the earliest possible opportunity. Researchers hope this will pave the way for national newborn screening that will lead to healthier lives for about 70 babies a year in the UK.

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SMA UK Picnic in the Park Summer Events SMA UK Picnic in the Park Summer Events

09 March 2022 / Posted in: Information, Support

We’re delighted to announce five SMA UK Picnic In The Park events this summer, taking place across the UK! These small SMA Community meetups are a chance to get together, in as safe a way as possible, in beautiful outdoor spaces, but with indoor space as well.

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Ukrainian SMA Families Appeal Ukrainian SMA Families Appeal

08 March 2022 / Posted in: Information, Support

As a matter of urgency, SMA UK, TreatSMA and SMA Europe are joining forces to provide our SMA Community with a way to support the Ukrainian SMA families and individuals who are so terribly affected by the current devastating conflict. We have therefore set up a JustGiving page for anyone who wishes to make a donation.

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Living With SMA Podcast - Episode #15 Living With SMA Podcast - Episode #15

04 March 2022 / Posted in: Information, Support

Meet Kerry, Sue and Clare who share their individual, personal experiences of health screening. How did their appointments go? And what tips and advice do they have? Find out on the latest episode of the SMA UK Living With SMA podcast.

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Baroness Thomas of Winchester urges for SMA screening as part of all Newborn Screening Baroness Thomas of Winchester urges for SMA screening as part of all Newborn Screening

02 March 2022 / Posted in: Information, Support

Baroness Thomas, Chair of MDUK’s Service Development Committee, has written an open letter to the National Screening Committee urging the UK government to include screening for SMA as part of all newborn baby screenings.

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