“KNOWLEDGE is power” is the message UK charity, Action Duchenne is sending out to families through their 2023 Science on Tour.
All parents want the best for their children, especially when they are unwell. But parents of children diagnosed with rare diseases are seldom given the information that they need to make informed choices for their child. The science behind the rare, muscle-wasting condition, Duchenne muscular dystrophy is complicated. However, by providing parents with a basic understanding they can make well-informed decisions about their child’s care, understanding of unwanted side effects of medicines and how to access the best standards of care.
Action Duchenne, the UK’s leading Duchenne charity, is tackling this gap in knowledge through the continuation of their groundbreaking ‘Science on Tour’ programme. The team successfully delivered 20 in person workshops across the UK throughout 2022. These sessions showcased interactive scientific exhibits helping families to understand the prevalence, progression and treatments available. The small group meetings provided opportunities for families to share their experiences and develop much needed support networks. Teams working with families, including clinicians and those providing support in school, were able to gain a deeper understanding of Duchenne to enhance their practice.
“After coming to the event in the summer, I started to feel in control for the first time since diagnosis. There is still a long way to go and every day we seem to come across another problem, but now we feel like we are equipped to deal with whatever that is.” Jamie, Duchenne Father
New Content, More Locations
This year we are back and bigger than ever, visiting 30 locations across the UK including Scotland and Northern Ireland from March to September 2023.
Dr Mehreen Arif, Chief Scientific Officer will be joined by Science Communications Coordinator Dr Sofiya Got and Outreach Officer Alex Berbank at the Science Education Programme workshops.
These sessions are half-day workshops in fully accessible venues and will delve into the following topics.
- What is Duchenne muscular dystrophy?
- Understanding genetics and mutations
- 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
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
Please find a full list of dates and locations below:
Whilst the internet can be a great resource, it’s also hard to separate the truth from the fiction. Finding accurate answers can be time consuming and emotionally draining for parents and carers. Time and emotion are at a premium for parents of children living with the life-limiting condition Duchenne muscular dystrophy, since their child’s muscles waste over time, the average life expectancy is around 30 and there is currently no cure. Action Duchenne’s Science on Tour events are designed to empower families through knowledge.
“Action Duchenne’s mission during the 2023 Science Education Programme is to equip Duchenne families with up-to-date information about Duchenne Muscular Dystrophy through a series of engaging scientific content. We will explain the science in plain English, empower families to challenge findings, ask questions, feel supported and give access to resources that will guide them through their journey with Duchenne.
We are very proud to be building a community – in bringing together families who live locally to each other we have facilitated the continual support that is so important when living with Duchenne muscular dystrophy.” Florence Boulton, National Director
Thank you
Action Duchenne 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.
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