We were joined in our SMA seminar by Consultant Neurologist Dr Channa Hewamadduma, NICE representatives Charlotte Bee and Marium Udum, SMA patient registry project manager Lindsay Murphy, Consultant Neurologist Dr Maria Farrugia, Clinical physiotherapist Kate Nevin and Liz Ryburn from the charity Spinal Muscular Atrophy UK.
Dr Channa Hewamadduma opened the seminar with an update on SMA for adults. He focused on some of the recent and ongoing clinical trials, as well as the benefits of adults with SMA (particularly those who are or will be, receiving Spinraza or Risdiplam) engaging with the SMA Registry. He gave great insight into the importance of SMA patient registry projects especially those who receive the drug through the managed access agreement (MAA). Charlotte and Marium from NICE were on hand to give further details about the MAA. Lindsay from the SMA patient registry spoke of the benefits of being a registry participant.
This was followed by a session on living with SMA where the panellists discussed the topics that regularly come up in clinics, physiotherapy benefits, access to psychological support and the impact of the coronavirus pandemic on services.
You can watch the full recording of the SMA seminar above or on our YouTube channel.
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There will be seminars throughout the year in our MDUK Muscles Matter 2022 online seminar series, including condition-specific sessions, practical sessions such as financial support and psychological care to help you live well, and seminars looking into ways you can manage your condition.
You can see the full list and book onto these Zoom seminars here.