As part of Spinal Muscular Atrophy Awareness Month, we split up our past SMA Muscles Matter videos into helpful questions and topics to help you access the information you want.
Muscles Matter 2022
On Tuesday 15 March 2022, 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.
View the timestamped SMA seminar on our YouTube channel.
Muscles Matter 2021
Our MDUK Muscles Matter 2021 seminars continued with a paediatric focused session on spinal muscular atrophy (SMA) which included information on SMA research, treatments and ways to manage the condition.
Muscles Matter 2020
In our 2020 Muscles Matter seminar, Professor Laurent Servais, Professor of Paediatric Neuromuscular Diseases at the MDUK Oxford Neuromuscular Centre, and Dr Suzan Hammond, Academic Researcher at the University of Oxford, talk about the latest in SMA research. They touched on newborn screening and studies into antibodies and molecular patches, and what the future of research looks like for SMA.
We were also joined by Dr Anne-Marie Childs, Consultant Paediatric Neurologist at Leeds Teaching Hospitals NHS Trust, and Felicity Vann, Senior Specialist Paediatric Physiotherapist at Evelina London Children’s Hospital, to discuss potential treatments for SMA – including Spinraza, Zolgensma and Risdiplam – with our Director of Campaigns, Care and Support, Rob Burley. The panel also explored how people living with SMA can best manage their condition, and talked about the use of spinal jackets and how best to access physiotherapy.
Thank you to Biogen for sponsoring our Muscles Matter 2022 SMA session and package
