Blog by Florence Boulton, National Director
Invitation to Action Duchenne International Conference 2022
‘Educating, enabling and including’ is the theme of the unmissable 20th International Conference, which launches this week.
From its inaugural meeting in 2002 at Imperial College London, Action Duchenne International Conference is the preeminent Duchenne muscular dystrophy conference in the UK, has always brought together families, clinicians, therapists, researchers and pharmacological companies from across the world.
Young people, adults and their families living with Duchenne are able to meet each other, gain empowering knowledge and discover how to live the very best life possible. For clinicians, researchers and academics, this conference provides an unrivalled opportunity to network, discuss the latest research findings and to share expertise in optimal standards of care.
We look forward to welcoming hundreds of families from all over the world. I know that as well as the content available, families and people living with Duchenne gain immense strength from meeting one another in person and sharing their experiences. Our priority is to deliver an event that brings our whole community together, to put together an unmissable event to make up for lost time.
Progress Update on Science Education workshops 2022
This summer we have successfully delivered 22 science education workshops. Having personally attended recent workshops to see them in action, I was so impressed by how the team tailored the pace of the presentation to our audiences’ needs, and made families aware of the facts behind the key decisions they might need to make.
Meaningful conversations and insightful discussions were held, the workshops led to many successful exchanges of contact details to continue these important conversations in the future. Everyone who has attended the workshops expressed that they had learnt something new today. My personal favourite section is when Mehreen goes into detail about the muscle anatomy and the crucial role of dystrophin for muscle function. Most importantly, the workshops provided a great platform for the Duchenne community to interact with each other, share and learn from their lived experiences.
“I think that today was brilliant I have been googling forever trying to understand what’s happening to my sons body this today has taught me everything I was looking for.” – Duchenne Mum, Belfast
“Talk on genetics was interesting and informative. Also understanding exactly the role of dystrophin in the muscle. Good to have reinforcement that what we are doing is essentially the best we can do given the nature of the condition and that so much is still unknown.” – Duchenne Mum, Norfolk
“The session felt relaxed and I felt very able to ask any questions I had. It was also great to meet other families affected by Duchenne.” – Duchenne Mum, Glasgow
“The enthusiasm and clear way everything was presented were excellent. It was exactly what I needed on our current journey down the Duchenne road. I now understand so much more than I did and feel the presentation was extremely well done.” – Duchenne Dad, Midlands
“The Action Duchenne hosts, Mehreen and Alex, were extremely knowledgeable, courteous and, most importantly, empathic. Communication was clear and content was delivered in a professional yet compassionate manner. The slides were fantastic, making complex concepts much easier to understand. There was a warm welcome which set the tone for the engaging and hugely beneficial workshops.” – Duchenne Mum, Dublin
We have received a great response from the attendees, there have been a total of 250 registrations for the Science on Tour 2022 workshops. We have supported and empowered 68 newly diagnosed families since the workshops started in May 2022. The team has identified any gaps and questions from the community that needed to be addressed and they have been quick to follow up on the queries and discuss with the right stakeholders to get the answer to the families. We have had representatives from the pharmaceutical industry join some of our workshops too and commend our efforts to bring Duchenne science to the doorstep of the community.
It is humbling to see the positive impact Action Duchenne is making, to equip families and carers with the right scientific knowledge to make important decisions for their loved ones.
‘Yes I can’ Transition to Adulthood – smiles all round in Exmoor
This month, staff members Ravi and Sadia journeyed to Exmoor, to hold the first of our two residential weekends at The Calvert Trust, a fully accessible activity centre- and it was wonderful! Regular readers of my blog will know that improving transition to adulthood for young people is my ‘why’; something I hold very dear and gives me drive in my work.
Seeing the photos of all the 16-25 year olds taking part in the ‘Yes I can’ transition to adulthood weekend made my heart sing! Each individual had the opportunity to challenge themselves, doing abseiling, zipwire, archery, and swimming as well as meeting new people. It was incredibly uplifting to see the young people living with Duchenne accessing the activities in an equitable way, and I was so proud of the team for making this happen for the families.
“It’s brilliant to be able to do things here that I can’t do in every day life” – 19 year old living with Duchenne
“I got to do things out of my chair that I wouldn’t normally get to do” – 18 year old living with Duchenne
“The weekend helped Isaac’s confidence in trying new things and gave him increased confidence to chat and make new friends” – Duchenne Mum
“Fantastic way for Harry to socialise and try new experiences” – Duchenne Dad
I hope you will enjoy looking at the photo gallery which gives you a taste of how brilliant the weekend was!
Accessible driving
Our recent ‘Yes I can’ transition to adulthood online session was all about learning to drive. It was interesting to hear the steps people need to take to get a suitably adapted vehicle, including where to go for an assessment, how to contact Motability and how to apply for your licence. It was powerful to hear from young adults living with Duchenne who have already blazed the trail and learned to drive themselves. They told the group that learning to drive was the best thing they had ever done, and I really hope the session has inspired the 14-25 year olds taking part to learn to drive themselves. These sessions always remind me that most things are possible, it’s just a matter of approaching the ‘how’ a little differently.
The technology is out there, and the funding available for people living with Duchenne to learn how to drive; through Motability and other avenues. If you would like to learn to drive, but need a bit of help, please get in touch with info@actionduchenne.org and we’ll happily guide you!
Coming together at the Beer Festival
From 2-6 August groups of Action Duchenne volunteers donned their blue AD t-shirts, grabbed their collection buckets and took London Olympia by storm! The lovely people at the Campaign for Real Ale (CAMRA) chose us as their charity for the biggest beer festival in the UK – the Great British Beer Festival! It was a fantastic opportunity for Action Duchenne to not only raise thousands of pounds, but also to raise awareness of Duchenne muscular dystrophy with almost 60,000 members of the public.
Niall, our young fundraiser
On Saturday 13th August, 15 year old Niall O’Doherty, who lives with Duchenne, walked 2.7 miles to raise money for Action Duchenne!
Niall lives at home in Northern Ireland with his parents Deborah and Kevin and siblings Oran, Ciara and Eimear. Following Niall’s diagnosis, Deborah and Kevin have raised a phenomenal amount for Action Duchenne. We are incredibly grateful and truly humbled by the exceptionally supportive community who go above and beyond to support the O’Doherty family and our much–needed work.
The O’Doherty family are truly remarkable, and are a much-loved part of the Action Duchenne family. I am proud beyond words of Niall, he truly is an inspiration. A huge thank you to everyone who has got behind this wonderful young man, we are so grateful.
In Remembrance
We were saddened to hear of the recent passing of two young people who lived with Duchenne muscular dystrophy. We wish to pass on our sincere condolences to their families and friends during this difficult time. Our Support Officers are here for you if you would find it helpful to talk to someone, please contact info@actionduchenne.org or call us on 07535 498506.
Farewell and thank you
A big thank you to Rob Laid and Ellen Lambrix for the enormous contribution they have made to the team as they step down as trustees. Rob joined the board in February 2020 and was Chairman for the period of April 2021 to June 2022 and Ellen joined the board in August 2021.
They both have been generous in investing their time; sharing their skills and expertise, which has directly contributed to our service development. On behalf of the entire team I wish them both the very best for the future and look forward to keeping in touch.
Welcome
Please join me in warmly welcoming two new members of the team this month; Jess Breeze and Lizzie Deeble. Recruited following their dedication and performance in the Volunteer team, both Jess and Lizzie are joining us to help deliver our projects; notably the ‘All-through Support’; Yes I can – transition to adulthood project and Action Duchenne’s International Conference 2022.
Both Lizzie and Jess will be familiar faces to regular blog readers, having written pieces about their own experiences as Duchenne Mums, fundraisers and volunteers.
We are delighted to bring onboard two more experienced, skilled and driven team members to help benefit the Duchenne community.
And finally – Riley’s Film wins award
We were completely overwhelmed and proud beyond measure when Riley’s Film was awarded Gold at the EVCOM Clarion Awards last month. Representing Action Duchenne at the awards ceremony was Riley’s Mum; Lyndsey, and her best friend; serial fundraiser Deborah, who proudly joined the Big Button team who collected the award. The audience were moved by the film, with the presenter stating, ‘Wow, what a film’ after it was shown.
Having beaten the stunning competition, which included films from charities which are household names, our video proved that it’s important to continue our work in raising the profile of Duchenne with the wider community.
A big congratulations and thank you to Riley and his family for allowing us to capture a snapshot of their lives; and to Sam and Kela of Big Button for their generous support and dedication to ensuring our message was delivered in a sensitive, uplifting way.
I look forward to bringing you the next blog soon!
Take good care of yourselves.
Florence
Action Duchenne International Conference
