25 April 2024
Over the past two months we’ve held information days in Scotland, England and Wales. We look back at the great feedback and talks from our three most recent events.
Over the past two months, following the success of our October 2023 Northern Ireland Information Day, we’ve held information days in Scotland, England and Wales. We look back at the great feedback and talks from our three most recent events.
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
Professional counsellor and psychotherapist (facilitates our virtual therapuetic support sessions)
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
England Information Day attendee
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 duch*enne muscular dystrophy, about his impressive music career and how his music supports his mental wellbeing.
“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.”
Jackie Munro
Head of Regional Support, Outreach and Information (Muscular Dystrophy UK)
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.”
Anonymous
Scottish conference attendee
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.”
Stuart
Wales information day attendee
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
Wales information day attendee
Upcoming Events
We have many opportunities throughout this year to connect with others in the community.
Information Days
Throughout the year we holdin-personInformation Days across theUK,whereyou can meet other people, get expertinformationand advice, and find out more about the services and support that we offer.
Read more
Muscle Groups
Local Muscle Groups are our network of support groups across the UK. They’re a great opportunity to share experiences and meet other people affected by muscle wasting and weakening conditions in your area.
Read More
More support groups
We know that talking to people with similar experiences is powerful. Our support groups are safe and welcoming places to talk to others affected by muscle wasting and weakening conditions, share experiences and meet people who understand whatyou’regoing through. Whetheryou’relooking to find support in-person, or online,we’vegot a support group for you.
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