At Action Duchenne, we have an unwavering commitment to supporting everyone connected to Duchenne throughout their whole journey.
Action Duchenne
We make a BIG impact on the Duchenne community; research for all, cutting edge science education & world class support.
Online Group Counselling
We know that being a Duchenne parent or carer is tough, and that a diagnosis like Duchenne impacts many of the relationships in your life. We know that it’s hard to find people who understand and that the right support can be hard to come by.? Action Duchenne is offering FREE online group counselling programmes to Duchenne parents and carers. These sessions will be a safe and supportive space to explore issues such as anticipatory grief, coping strategies and managing anxiety.?
Our previous groups have also created invaluable friendships and connections that have lasted beyond the counselling sessions.?
We’re planning our next group to start on Tuesday 24th September, running from 10am-11.30am for 8 sessions. We still have places available, so please email [email protected] as soon as possible if you're interested.? And if you'd like to know more about what's involved, Kelly talks to the counsellor who runs the sessions and answers all of your questions in the video below.?
Pit-Stop New support space at the Action Duchenne Annual International Conference 2024
Our theme for the 2024 Annual Conference is 'Educating, Connecting, Wellbeing'. As well as providing the latest research updates, hearing?from the experts involved in the care of Duchenne and?giving you the chance to connect with other families, friends and clinicians, we want you to leave our conference having had the opportunity to focus on your own mental health and wellbeing. One of our 3 streams focuses entirely on 'Wellbeing', with sessions on grief and loss, psychosocial care and tackling depression and anxiety. We've got a whole range of amazing speakers such as David Schonfeld, Jame Poysky, Linda Bouquillon and Rory Conn.?
For the first time we are introducing the 'Pit-Stop': a place to take a few minutes to yourself, to talk to someone, or to have a quiet cup of tea and give yourself some space. There'll always be someone there to chat to, or to leave you alone if you'd rather. We'll have trained counsellors on-hand to talk to in private if you're finding things hard or to tell you more about what you could get out of the counselling process if you're considering it.To help you re-charge and relax, there'll be free aromatherapy hand massages (from a qualified masseuse) available on both days. And one of our team will be there at all times just in case you need us.?We know that wherever you are in your Duchenne journey, there are times when the conference can bring emotions to the surface. There's often a lot of information to absorb and it can be challenging to find the space?to process it all.?The Pit-Stop will give you that, anytime you need.?
Support. Space. Wellbeing.?
Have you booked your tickets yet??They're FREE for Duchenne families and anyone living with Duchenne, and we've got a grant of up to ￡100 available for travel and accommodation too.
Online Support Groups
In May 2024, we relaunched our online Support Groups. As we all get back into our routines after the Summer holidays, we just wanted to remind you of our different sessions. You are welcome to pop in to them at any time - there is no commitment to attend for the whole time, or every time. Many people feel isolated and overwhelmed by Duchenne and the challenges it brings. In our experience, no one understands that better than those who are dealing with it too!
Time Out - A Space for Mums:?The most common thing we hear from Duchenne mums is the struggle to juggle it all, the pressure to hold it all together and the total lack of any space for themselves. Even if it’s just once a month, we want to create a space just for you.? The brilliant club that no one chose to be a part of.?
1st Thursday of every month, 8-9pm
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Dads Against Duchenne: Our DAD’s group was the inspiration behind the our new groups. It’s about? relaxing with other men who are in the same situation. There's no set agenda each week, it’s as open ended as going to the pub or for a meal with mates. Together there’s not a problem Duchenne throws at us or our families that we can’t deal with.?
1st Monday of every month, 8-9pm
Grandparents Together: Many grandparents we speak to feel that their role following a Duchenne diagnosis is to support?their children and grandchildren. But it can be difficult to know where to start. This?is a safe space for you to ask all your questions and have a chat with others who understand.?
1st Friday of every?month, 10-11am
As well as our monthly support groups, please remember that our amazing Support Officers are here for you. If you'd like to talk to someone 1-1, please email [email protected] and we'll get back to you
Duchenne 101 Online
Bringing Knowledge and Support to You: Saturday 28th September
2pm – 5pm
It's a chance to meet our support team, connect virtually with others and hear about the latest Duchenne science and research updates. This year we have 6 sessions covering the medical, psychological and social aspects of living with Duchenne and what we can do to get the best outcome for everyone living with Duchenne.?
Sessions are:?
We want to arm you with the knowledge and the information to make sure you and your family get the support or help you deserve.? It's a brilliant introduction ahead of our in-person conference in November, so you'll have familiar faces as soon as you arrive and the chance to get to know our team too.? The day will be run and hosted by Alex from the Action Duchenne team and if you have any questions at all about the day or want any further information please contact him at?[email protected]?or call/ text him on 07939973981. We look forward to seeing as many of you there as possible.