Marking Becker awareness week (4 – 10th October), we were joined in our BMD seminar by Professor Federica Montanaro and Dr Thomas Gsokios to talk about the latest BMD research. They talked about the research into heart function and weakness in patients with BMD.
We were joined by Dr Mark Roberts, physiotherapist Nick Emery, Specialist Neuromuscular Advisor Wilma Stewart and supporter David Gale to discuss potential treatments for BMD with our Director of Campaigns, Care and Support, Rob Burley. The panel also explored how people living with BMD can manage their condition more effectively, and talked about managing pain
You can watch the full recording of the BMD seminar below or on our YouTube channel.
The BMD seminar was followed by our ‘accessing financial support’ seminar. Our panel, including MDUK staff Neeru Naik, Beth Tingley and Jackie Munro from the Advocacy and Support team, and peer support volunteer Mark Hall discussed how to navigate the various benefits people living with muscle-wasting conditions may want to apply for, how to overcome issues in applying and how MDUK and trained peer support volunteers can support you. Peer support volunteer pointed out that applying for benefits such as Personal Independence Payments (PIP) can mean focusing on your worst days which can impact your mental health.
You can watch the recording of our ‘accessing financial support’ seminar below or on our YouTube channel.
In January we released the 'Below Standard' report on benefits, which you can find out more about here, and access our guide to Applying for PIP.
There are still two sessions to come in our MDUK Muscles Matter 2020 online seminar series, one on Charcot-Marie-Tooth and one on accessing services in the time of COVID-19. You can see previous seminar recordings, and book onto these Zoom seminars here.