Care
The support that improves quality of life
The Care stream focuses on the real-life challenges and decisions faced by people living with Duchenne and those around them.
Our Care stream offers practical, emotional and holistic support that helps individuals and families thrive. Through expert guidance and personal perspectives, these sessions explore the support strategies and approaches that make a difference every day.
Day 1: Supporting Families, Learning and Everyday Living
Looking After You Too: Emotional Support for Families and Carers
You can’t pour from an empty cup. Caring for someone can take an emotional toll and this session puts carers centre stage. Learn how to recognise stress, prevent burnout and find practical ways to protect your own wellbeing because supporting yourself is an important part of supporting others.
Making Everyday Life Easier: Getting the Most from Occupational Therapy
Discover how occupational therapy can help turn everyday challenges into opportunities for greater independence.
Supporting Movement Early: Making Physiotherapy Part of Everyday Life (Ambulant)
Physiotherapy is about more than exercises. This interactive session will explore realistic, achievable ways to build movement and healthy habits into everyday routines, helping families feel confident supporting physical wellbeing from an early age.
Navigating the Education System Without the Stress
School should be a place where every child can thrive. Learn how to access the right educational support, understand your rights and confidently advocate for the adjustments and resources your child needs to succeed.
Day 2: Relationships, Wellbeing and Quality of Life
Adapting with Confidence: Supporting Comfort, Movement & Positioning (Non-Ambulant)
As needs change, comfort and positioning become increasingly important. This practical session will explore ways to support movement, comfort and independence, helping improve both wellbeing and quality of life.
Navigating Healthy Relationships While Living With Duchenne (LWD Adults Only, 16+ Years)
Relationships are an important part of life for everyone. This safe and supportive session will explore communication, confidence, boundaries, self-advocacy and what healthy relationships look like when living with Duchenne.
Supporting Young People to Navigate Healthy Relationships (For Parents)
Many parents wonder how to start conversations about relationships, friendships and growing independence. This session will provide practical guidance to help families have open, supportive conversations while empowering young people to build confidence and self-esteem.
Beyond Physical Health in Duchenne: Mental Health, Education and Quality of Life
Duchenne is about much more than physical health. Explore how emotional wellbeing, education and mental health all influence quality of life and learn practical ways to support the whole person, not just the condition.
Leave with practical strategies, trusted advice and a deeper understanding of how small changes can make a big difference for both people living with Duchenne and those who care for them. Most importantly, you’ll leave knowing you’re not alone on this journey.
