We decided our regular online support groups needed a bit of a re-think. To make sure we’ve got everyone covered, there are now going to be 4 different groups which will each take place once a month.
Dads Against Duchenne:
1st Monday of every month, 8-9pm
Our DAD’s group has been the inspiration behind the change and won’t change. 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. We can talk about the big stuff one week and maybe even the football , or the music we grew up on the next. The content isn’t what matters, what matters is that we are surrounded by a great team on these nights, and together there’s not a problem Duchenne throws at us or our families that we can’t deal with.
Together, united, Dads Against Duchenne.
Open Space:
1st Wednesday of every month, 8-9pm
We know that Duchenne impacts everyone, not just the immediate family. It can be tough for those who love someone with Duchenne to know how and where to go to understand more about Duchenne, to know how to help their loved ones or to access support. There many things you’d like to ask that you don’t want to bother the parents with. Perhaps you want to talk about how to explain Duchenne to your children, to understand the progression of Duchenne or to learn about what research is taking place, Open Space is our session for anyone connected to Duchenne, from aunties and uncles, adult siblings and family friends to professionals, school staff and clinicians working with someone living with Duchenne.
We’ll have speakers who can answer your questions, meet others who really understand and be part of a network of support. We are stronger together.
Our first session will take place on Wednesday 1st May.
Time Out – A Space for Mums:
1st Thursday of every month, 8-9pm
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. So even if it’s just once a month, we want to create a space just for you. A space to come together with other Duchenne mums who are often feeling the same. A safe space to say the things you can’t say to other people, to share the dark humour and the things that you can’t quite manage to laugh about yet. A port in a storm. The brilliant club that no one chose to be a part of. You don’t have to do it alone.
Our first session will take place on Thursday 2nd May.
Grandparents Together:
1st Friday of the month, 10-11am
Many of the grandparents we speak to feel that their role following a Duchenne diagnosis is one of support for their children and grandchildren. But when you aren’t at the clinic appointments and you don’t know who to ask about this overwhelmingly complex condition, it can be difficult to know where to start. Running once a month on a Friday morning, we want to create a safe space for you to ask all your questions alongside others in the same situation and to have a chat with others who understand. There’ll also be experts who can help to develop your understanding of Duchenne and give you the tools to feel confident in supporting your children and grandchildren. We are stronger together.
Our first session will take place on Friday 3rd May
If you would like to talk to someone 1-1, please contact our Support Officers anytime on info@actionduchenne.org. We are here for you and your family, and we are stronger together.
