Free workshops for parents, caregivers and professionals in accessible venues
We are here to help you make informed decisions, understand more about the science of Duchenne and get up to date information about treatment options.
We offer unbiased information in an easy to understand way at the same time as giving you an opportunity to meet other families in the local area.
Science workshop topics
- Understanding genetics and mutations
- What is Duchenne muscular dystrophy?
- Role of dystrophin in the muscle
- Dystrophin in the brain
- What are clinical trials?
- Current management and emerging treatments
- Support for families and helpful resources
Empowers families and gives them the tools & confidence to get to grips with jargon used. Recommended to all families! No previous science or research knowledge required. Suitable for all families!
Neuromuscular nurse
Who will benefit from attending?
- Duchenne parents and carers at all stages
- Adults living with Duchenne and their PA teams
- Duchenne family members i.e. Grandparents, adult siblings, extended family who want to get a greater understanding of the condition
- School staff (SENCo, Teaching Assistants, Teachers, Inclusion team)
- Healthcare professionals
- Neuromuscular teams
Locations
- Scotland & Northern Ireland: Glasgow, Edinburgh, Belfast, Dublin
- The North: Liverpool, Blackpool, Manchester, Newcastle, Middlesborough, Sheffield
- Central and Eastern: Cambridge, Norwich, Leicester, Lincoln, Birmingham, Hull
- Londo
- Wales and the west: Bristol, Swindon, Cardiff, Swansea
- South: Oxford, Reading, Southampton, Colchester, Brighton, Maidestone, Exeter, Plymouth
Science workshop timings
- 10:00 tea, coffee and a warm welcome
- 10:30 workshop starts
- 12:30 lunch
- 13:00 afternoon session starts
- 14:45 tea, coffee and a chance to chat
- 15:00 farewell and thank you
We would like to thank the following sponsors who have provided financial support for this project
but have no involvement in this project: Garfield Weston Foundation, HM Government (in
partnership with the National Lottery Community Fund), Pfizer, PTC Therapeutics and Sarepta
Therapeutics.