MDUK Muscles Matter 2020 – Tuesday 25 August round-up

Published Date
Emma Smith-Bodie
Care & Support

The first of our MDUK Muscles Matter 2020 seminars took place on Tuesday 25 August, virtually bringing together people living with muscle-wasting conditions from across the UK.

In our first condition-specific seminar, which marked SMA Awareness Month, 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 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 such as the Chartered Society of Physiotherapists Physio2u tool.

You can watch the full recording of the SMA seminar below or on our YouTube channel.

The SMA seminar was shortly followed by our first topical seminar, ‘Living in a world with COVID-19’. The pandemic has changed much of our normal lives. In this session we discussed what impact this has had and what challenges people living with muscle-wasting conditions have faced and continue to face as we adjust to a “new normal”. Rob Burley was joined by Dr Jatin Pattni, Psychologist at Queen Square Centre for Neuromuscular Diseases, Sue Manning, Neuromuscular Specialist Care Advisor at Leeds Teaching Hospital NHS Trust, Chloe Ball-Hopkins, an MDUK supporter and co-designer of our shielding badges, and Ella Wright from National Voices ‘Our COVID Voices’ team. They talked about the impact shielding has had on the physical and mental health of people living with muscle-wasting conditions, the challenges that social distancing presents, and how we’re working to make the public aware of the situation for people classed as “extermely clincally vulnerable”.

You can watch the recording of our ‘Living in a world with COVID-19’ seminar below or on our YouTube channel.

There are still 10 sessions to come in our MDUK Muscles Matter 2020 online seminar series, including condition-specific sessions to mark the awareness days, weeks and months during this period, and topical sessions such as managing education, navigating the world of employment, and accessing financial support. You can see the full list and book onto these Zoom seminars here.



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