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Information Day in London

Join us on Friday 21 March 2025 for our free Information Day in London for adults and parents of children living with a muscle wasting condition.

Sign up to participate

Hear from experts about a range of different topics, find out more about the advice and support we offer and meet other people affected by muscle wasting and weakening conditions. 

This event is not only a great way to get expert information and support, it’s a chance to connect with others who have a muscle wasting or weakening condition and share your own experience, tips and advice. 

You’ll also have the opportunity to talk to other organisations working in the muscle wasting and weakening community. 

Last year we asked you what you’d like to hear about at our Information Days and we’ve shaped the agenda based on what you told us.

Speakers will cover topics including:

  • Travel and accessible holidays
  • Personal experience of living with a condition
  • Physiotherapy and fatigue management
  • Research and treatment updates

Our Information days are open to anyone across the UK.

Details
Date Friday 21 March 2025 Time 10:00 Location Coin St Conference Centre, 108 Stamford St, London SE1 9NH Sign up to participate

More information

This event will be chaired by Wojtek Trzcinski, Chief Operating Officer at Muscular Dystrophy UK

10am – 10.30am 
Registration, teas and coffees 

10.30am-10.45am 
Welcome & introduction
Wojtek Trzcinski l Chief Operating Officer
MDUK  

10.45am – 10.55am 
Services & Support updates
Neeru Naik I Director of Services and Support
MDUK 

10.55am – 11.25am 
Research update 
Dr John Copier, Research Manager,
MDUK  

11.25am – 12.25pm 
Euan’s Guide: Joe’s Journey
Joe Logue I Community Manager
Euan’s Guide 

12.25pm – 1.25pm 
Lunch
South Bank Rooms 

Following lunch: 

Tailored sessions for adults will continue in the lower ground South Bank Rooms.  

Tailored sessions for parents and families will take place in the ground floor Neighbourhood Room.

1.25pm – 2.10pm (South Bank Rooms
Living Well, together: collective hope and resilience in the midst of loss and disability
Louise Halling, Counsellor and Psychotherapist &
Julie Oates, Psychotherapist

1.25pm – 2.10pm (Neighbourhood Room) 
Mental wellbeing for families/parents, children 
Kate Waters | Family and Systemic Psychotherapist, Great Ormond Street Hospital
 

2.10pm – 2.55pm (South Bank Rooms) 
Exercise and physical activity for adults: what to do and how to do it
Sherryl Chatfield I Clinical Specialist Neuromuscular Physiotherapist 
Atkinson Morley Neuromuscular Centre
St George’s University Hospitals NHS Foundation Trust 

2.10pm – 2.55pm (Neighbourhood Rooms) 
Physiotherapy management in children 
Jennie Sheehan I Clinical Specialist Paediatric Physiotherapist in Neuromuscular Disorders
Evelina London Children’s Hospital, London

2.55pm – 3.25pm 
Refreshments
South Bank Rooms 

The following session is in the South Bank Rooms for all attendees  

3.25pm – 4.10pm
Lived experience session 
Priyaneet Kainth
MDUK Volunteer, living with CMT

4.10pm – 4.55pm 
Enabling Independence through Equipment and Adaptations: The Role of Occupational Therapy in Neuromuscular Conditions
Veronica Dappio I Neuromuscular Care Advisor (South West London)

4.55pm 
Closing remarks
Wojtek Trzcinski l Chief Operating Officer
MDUK 

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