Marking mitochondrial disease Awareness Week (13 – 19 September), we were joined in our mitochondrial disease seminar by Dr Yi Ng and Professor Antonella Spinazzola to talk about the latest mitochondrial research. They talked about the clinical prevalence of mitochondrial disease in the UK, the variety of symptoms that individuals with the condition can experience, the centres that are recruiting for drug trials, as well as the challenges the neuromuscular research field currently faces.
We were then joined by Dr Jane Newman, Dr Victoria Nesbitt and Jodi Allen to discuss how people living with mitochondrial disease can manage their condition more effectively. The discussion brought up an array of topics such as the importance of getting the appropriate nutrition and exercise, with the panellists recommending building simple strategies into your daily routine.
All panellists agreed that there is no 'one size fits all' approach to mitochondrial disease, which relays the need for assessments to be done on an individual basis, factoring in the level of severity of the individual's condition. Each speaker also spoke of the challenges Covid-19 has presented; with many services and appointments being delivered online in place of in-person. You can watch the full recording of the mitochondrial disease seminar below or on our YouTube channel.
The mitochondrial seminar was followed by our ‘Managing education’ seminar. Our panel, including Liz Williams, Jordan Mossom, Natalie Smith and Gerry McMenemy and Jane O'Connor discussed the individual challenges and issues they faced when working with school/universities to make their institutions more accessible and inclusive.
It was discussed that having an Education, Health and Care Plan (EHCP) that schools can refer to is vital to ensure that each child gets the ongoing personalised support that they need. And whilst it was clear that many schools have shown great willingness to adapt and accommodate children with a muscle-wasting condition, there's still more that needs to be done to raise awareness, understanding and provide further support. With regard to Higher Education, Jordan told his story about applying for University and that deferring his University place was presented as an option due to the lack of support and facilities in place at the time of his applying. Watch the full seminar online or below.
There are still six 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 navigating the world of employment and accessing financial support.
You can see the full list and book onto these Zoom seminars here.