OVER the weekend of 13 and 14 November 2021, Action Duchenne welcomed families, researchers, clinicians and pharmaceutical companies from across the world.
With registrations from 400 people from 40 countries, the charity provided a varied agenda, interactive network space and evening social opportunities. Over the seven sessions, each lasting two hours, the exquisitely chosen panels comprised; world-class experts in their fields, lived experience from people living with Duchenne muscular dystrophy, insight from pharmaceutical partners and Duchenne families. The resulting discussions, sharing and exploring topics was inspiring, uplifting and transformative.
I have found these sessions incredibly helpful and so beneficial for me going forward in my practice.
Clinical Nurse Specialist, Conference
Supported by Patrons and Ambassador
Actress Helena Bonham Carter and comedian Harry Hill, both proud Patrons of Action Duchenne shared messages of support for the international Duchenne community and expressed the importance of coming together at the conference.
I am in tears. There are parents out there who understand how duchenne works. I can relate to a lot of what’s being said.
Duchenne parent, Conference 2021
Living life to the fullest
Broadcaster and journalist Jonny Gould helped amplify the voices of the stars of Action Duchenne’s recent podcast ‘Music and me’. At the conference’s evening social on Saturday 13th November, he welcomed musicians Sanjeev Mann and Joshua Waywell, and congratulated Alex James on his recently obtained Masters in Music. The social event saw musicians come together with sportspeople, as Paralympians Scott and Jamie McCowen celebrated their successes with their peers.
Thanks to all for a very inspiring and thought provoking session this afternoon.
Family supporter, Conference 2021
I am really excited for my son’s future, seeing him develop as a young man living with a disability makes me incredibly proud. His disability is part of him but not who he is, and who he is, well, he’s pretty amazing. I know how much he likes to find out about older boys and adults living with Duchenne, and I don’t think he is alone in that. These boys have some great role models!
Duchenne Mum, Conference 2021
LEGO Master Builders
In the month before the international conference, LEGO Master Builders were invited to submit their entries for 8 Quests, each with their own prize (supported by Paskin Children’s Trust). Conference attendees were asked to vote for their favourite builds on the interactive conference platform.
Congratulations to the winners (shown below) who will receive their prizes before Christmas and thank you to everyone who took part.
A big thank you to everyone who helped organise the conference. So supportive as ever!
Trustee, Conference 2021
Thinking to the future
Covid-19 had a significant impact on all charities, however Action Duchenne have had major success in obtaining funding to secure the future financial viability of the charity and to continue to “punch way above its weight”.
Action Duchenne is an amazing organisation to be involved with providing outreach to the Duchenne community and funding science education and research projects to help Duchenne young people, adults with the long-term goal of finding a cure.
Treasurer
In the next 3 years, the charity will focus on increasing support and delivering more innovative projects. They will achieve this by:
- putting value at the heart of their supporters and Duchenne families;
- re-establishing the science and research communication service;
- understanding what supporters value most;
- expanding their support and education services to explore new support opportunities;
- building stakeholder engagement networks with members, supporters and volunteers;
- developing an impact and evaluation framework for continual improvement;
- being transparent about their work so everyone can be confident that Action Duchenne is acting responsibly and investing resources wisely.
Save the date
Thank you for the invite, it’s been great to attend and be a part of ! Well done to all the team for your coordination and putting on a fab conference.
Changing Places, Conference 2021
Action Duchenne exists to support and serve the Duchenne community. Plans are underway for the Action Duchenne International Conference 2022, taking place Friday 11 and Saturday 12 November.
ENDS
For all media enquiries please contact Lynnette Ellison (Marketing & Support Officer) via lynnette@actionduchenne.org.
Notes to Editors
About Duchenne muscular dystrophy
Duchenne muscular dystrophy is a rare genetic muscle-wasting disease. The progressive condition is usually diagnosed in early childhood and mainly affects boys. In the UK, approximately 100 cases are diagnosed each year, and there are approximately 2,500 people living with the condition at any time.
People living with Duchenne experience progressive muscle weakness and typically need to use a powered wheelchair from their early teens. The heart and breathing muscles are affected and most will require a ventilator and 24 hour care in their twenties; life expectancy is around 30 years in the UK. There is no cure and treatment options are limited.
Duchenne can occur unexpectedly in any family with a third of cases occurring in families with no previous history of the condition.
About Action Duchenne
Formed in 2001, Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy. Our work to date has seen over £10m invested in research, support, educational programmes and campaigns. We have made some incredible achievements.
We have a clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy.
We are working to deliver the vision through our three core objectives:
- Developing effective treatments for all by funding research, educating clinicians and researchers, supporting clinical trials and campaigning for access.
- Building a community by uniting families, educating about Duchenne and raising the profile of the condition to a wider audience.
- Striving for a more inclusive society by promoting the importance of human equality, day-to-day acceptance of disability and accessibility for those with Duchenne.
Lego Quest 2021 winners!
