Our information days have brought together people living with a muscle wasting condition, their families and carers, neuromuscular specialists, physiotherapist and many more. We’ve been blown away by the response and attendance at these events. As well as presentations from specialists in the neuromuscular field and updates from our own staff about the services we provide and the research we fund, people from the community have shared their own valuable lived experience, including tips and advice for others.
England Information Day
We held our on Saturday 9 March in Birmingham. People from all over England came to participate in an interactive day full of presentations, talks, and discussions.
The participants heard from a range of speakers including Dr John Ashworth and Dr Yvette Easthope-Mowatt on the emotional impact of living with a neuromuscular condition; Heather McMurchie and Jo Reffin on physiotherapy management; Angela Reddy, Critical Care Lead Dietician, on nutrition in adult muscular dystrophies; and Jane ‘O’ Connor, Neuromuscular Care Advisor for Transition, on understanding transition.
Several people from our online therapeutic support sessions also attended, including the group facilitator and counsellor, Louise Halling, and they were able to meet in person for the first time, holding a breakout session together.
“The information day was a great chance to meet people face to face, people I had met on a screen. It was also a chance for those who took part in the therapeutic support groups to meet each other in person which has strengthened their bonds and friendship. All of this leads to a greater sense of support and camaraderie and above all, helps people (including me) to feel less isolated and alone.” – Louise Halling
Our Care, Campaigns and Support team were available all day to talk to people about our work and the services we provide, while ensuring attendees found the day positive and helpful.
“It was a great opportunity to meet up with my mentor who has the same strain of muscular dystrophy as myself. It was really nice to be able to meet face to face and chat about our life experience living with this condition. The conference itself gave my wife and I a greater insight into how the muscular dystrophy community works and the help and advice it can provide.” - Alan
Scottish Conference
Our Scottish Conference took place on Saturday 23 March in Stirling. This was the first time it had been held in Scotland since 2018 and the community were happy to come together in person once again. There were talks from specialists, including Marina Di Marco, Consultant Neuromuscular Physiotherapist, on adult physiotherapy, exercise and fatigue management; Dr Lisa McCann, Senior Lecturer in Digital Health and Care, on attending university and higher education; and a panel discussion on inclusive education in primary and secondary school with Paul Nugent, headteacher, Gerry McMenemy, parent, and Martin Donald, teacher.
Attendees also got to hear from Sanjeev Mann, who lives with Duchenne muscular dystrophy, about his impressive music career and how his music supports his mental wellbeing.
Jackie Munro, Head of Regional Support, Outreach and Information said:
“Sanjeev brought the Scottish conference to a close with a really powerful presentation showing that anything is possible in a world with a complete under-representation of disabled artists.”
The team received lots of positive feedback about the success of the day:
“I attended MDUK’s Scottish conference today. The sessions were all so informative and valuable. For me, nothing is ever quite as valuable as connecting with others and feeling less alone as we navigate this journey.”
Wales Information Day
Our final information day was held on Thursday 18 April in Wales with people in the community, neuromuscular experts, and staff coming together. The day included talks from Rhiannon Edwards, Rare Diseases Implementation Group, Public Health Wales, on the Wales Rare Diseases Action Plan; Neuromuscular Specialist Physiotherapists Heledd Tomos and Hayley Davis on physiotherapy, exercise and fatigue management; Neuromuscular Care Advisor, Fiona Davies and Neuromuscular Clinical Nurse Specialist Clare Fletcher on information and support in the community. We also heard from voices in the community, Hasminder Alukah and John Foxwell.
One of the highlights from the day was John Foxwell’s talk about living with Pompe disease, his diagnosis, and what he’s done to raise awareness of the condition. Attendee Stuart said:
“Some of the sessions have been absolutely excellent. The last two were my favourites, on Pompe disease and physio.”
Everyone who attended said the day was informative, fun and eye-opening:
The Information Day is so important because it’s a way for people with all types of muscular dystrophy to come together, share different experiences and feel less alone in their lives. It’s just been great to communicate with people who can relate to me and can understand what I’m going through. And also gather some new advice and information from specialists and people living in the muscular dystrophy community. I can’t wait until the next event. – Cerys
Upcoming events
We have many opportunities throughout this year to connect with others in the community and find out about the latest information and advice for neuromuscular conditions. Details about this year’s Northern Ireland Information Day will be coming out soon. Our Muscle Groups are a great way to meet people with muscle wasting conditions in your local region. We also have a variety of more tailored support groups that hold regular meet ups, such as the Young Adult Support Group and therapeutic support groups.