Resilience, care and transformation – end of year reflections from our CEO
As we head towards the bustle and business of the festive season, I am reflecting on the past year. As always with life, there have been ups and downs, joy and grief, success and disappointment. The common thread running through it all for our charity continues to be our All-through Support. This is not simply a title to tie our projects together, it is the foundation on which our work is built. Our vision remains unchanged and our drive grows ever stronger.
Two years of All-through Support
It has been two years since we launched our All-through Support programme, with the backing from the National Lottery Community Fund; the first of its type for Duchenne muscular dystrophy. It has the aim of providing support for our community from diagnosis onwards. It is at the heart of our charity and has enabled us to take steps to address the unmet needs of families living with Duchenne. Our science education programme, with Science on Tour workshops and our Science Live video series, provides families with the knowledge they need to make informed decisions. Our programmes for young people aim to facilitate a better transition into adulthood, with increased knowledge and confidence to realise their potential. We offer ongoing emotional support to help families to be able to live the very best life they can alongside Duchenne. Online group counselling sessions have given parents and carers the opportunity to address the challenges of coping with a diagnosis of Duchenne alongside others who really understand, complimenting the 1-1 support calls and regular online support groups run by our designated support officers.
We are immensely proud of all that has been achieved in the last two years and we are delighted to share the impact of our work in 2023.
On behalf of the entire Action Duchenne team, I would like to thank the following sponsors who have provided financial support for the projects, and all the individuals whose contributions helped to make these projects happen. Your unwavering support to the charity and to the community means a lot to me and the team here.
As a staff team, our last 12 months have shown the passion and drive that is at the heart of our work. We are constantly striving to develop the services we offer to families to give them the support they need at whatever stage they are at.
This gives me inspiration as I look forward to 2024, knowing that we have so much work still to do. As I think about how to best use our valuable resources and how to continue to bring in our partner organisations to develop our collaborative resources, I know that we are stronger together.
Our voice has been heard
Confirmation of this strength as a global community came in the form of the UN’s decision to recognise Duchenne muscular dystrophy with an official annual awareness day on the 7th of September. As the UN’s first formal acknowledgement of a day dedicated to a rare disease it is a groundbreaking moment for the Duchenne community. The collective voices across the world have been heard and Duchenne has been highlighted as a priority on an international level. The awareness this will raise and subsequent steps forward in accelerating research gives hope to us all.
Read more about the UN’s decision here
My 2023 highlights
2023 has been so busy, building strength and forward momentum together. I have been so grateful to be able to meet so many families, young people and members of our community and they continue to give me the power to keep fighting for a better future for everyone living with Duchenne.
One of my favourite memories of this year is of the Dinner Dance, organised by Ruth Taylor and her wonderful committee. Ruth and Ian’s much loved old son Max was diagnosed with Duchenne muscular dystrophy in 2020. On March 25th 2023 Ruth and the group of friends who became the committee (Sally, Vicky, Deb and Sadie) organised an amazing black tie dinner dance at Aston Villa Football Club. The event had over 330 people, live bands, a DJ, a raffle and a silent auction. Brilliant prizes from local businesses and organisations for both the raffle and an auction fuelled the fundraising, the generosity demonstrated that the community have taken this family into their hearts.
Their passionate campaigning for supporting families immediately after diagnosis and raising funds to help our much-needed supporting families initiative was truly inspiring – thank you!
Yes I Can in Exmoor
Our ‘Yes I Can’ transition to adulthood programme has always been close to my heart. Our residential weekends give our young people and their parents and carers the chance to come together with others who share their experiences and establish a strong support network where they can rely on each other to help get through difficult times during the transition to adulthood. Being together with the families after a busy day rafting, rock climbing and archery really brought home to me the value of the support we provide as a community. Sharing advice, experience and the joy of a day spent together created strong memories.
I took part in a weekend at the Calvert Trust in Exmoor with a group of young people living with Duchenne and their families, and was so honoured to be a part of this transformative experience. It was a very special weekend, demonstrating the extraordinary ability of our community to find hope and laughter together despite challenge.
Vitality 10,000
I was so honoured to be joined by the largest group of runners we’ve had for any event yet, and 20 of us took on the 10km route through many famous London landmarks to finish outside Buckingham Palace. Families, staff and supporters joined us for a post-event picnic in Green Park, coming together to celebrate the dedication to our community. The physical challenge was tough for me, but it was the unstoppable power we have together as a community that pushed me to the very end!
Annual International Conference 2023
Our conference is always a highlight of the Action Duchenne calendar. One family described it to me as being “like Christmas” for them; a chance to come together, with a sense of family and community.
Shared lived experience brings empathy and kindness as well as strength and hope and this was reflected in the atmosphere throughout the 2 days. I was especially touched this year by the commitment of our volunteers who worked tirelessly to support our staff team. I was moved by the dedication of our charity patron Harry Hill who not only presented our first ever AD Champions Awards Ceremony, but also stayed to talk to the young people in our Hang Out area and with families, yo listen to their experiences and be part of the event. I know it meant a lot to the people he spoke to and was above and beyond his role as patron of our charity.
Read more about the Annual Action Duchenne Conference 2023 here and view pictures from the event here.
SAVE THE DATE
Plans are already underway for the Action Duchenne International Conference 2024, taking place on Friday 8th and Saturday 9th November 2024. With this in mind; please ‘save the date’
Farewells
I wanted to take this moment to thank two valuable members of our amazing team of trustees: Dr Tina Flatau and Mr Simon Dadd, for being so supportive to me and the team here over the past few years – devoting a significant amount of time bringing researchers and scientific expertise together to our Annual International Conference and science education events, reviewing AD strategy, improving the governance operating model as we pursue growth and long-term financial sustainability.
“The Board sincerely thanks Tina and Simon for their contribution over many years, bringing a wealth of experience and dedication to Action Duchenne. Both worked tirelessly to reshape the charity through the many challenges faced by the charity, all exacerbated by the Covid-19 pandemic. It is a great testimony to both that the charity came out of the pandemic stronger, more agile and renewed in purpose. The board is indebted to their contribution, unseen but pivotal in steering the charity to become reinvigorated and more impactful to the community it serves.” The Action Duchenne Board of Trustees
Dr Tina Flatau has been a member of our board of trustees for six years. Bringing in her extensive knowledge and experience of the pharmaceutical world her contribution to Action Duchenne has been so valuable. Simon Dadd has also been a trustee of Action Duchenne for several years and the combination of his professional experience as a civil servant and his lived experience as a father of two boys who live with Duchenne has made him an invaluable part of our team. On behalf of Action Duchenne I would like to thank them both for everything they have done for the Duchenne community and wish them all the best for the future. We hope our paths will continue to cross!
Welcome
It is my pleasure to welcome two new members to our staff team.
Richard Muncaster is our new Head of Fundraising and has worked in the charity sector for over 20 years in a variety of fundraising and leadership roles. Having also spent many years working with organisations that promote child welfare, tackle climate change and campaign for the rights of disabled people, Richard is bringing a wealth of experience and knowledge to our team.
John Marrin joins us as Science Communication Coordinator. He’s a biologist who specialises in biomechanics and energetics of locomotion and with 10 years of experience working on various research projects in university labs across the north of England. We are very excited to have both on board, and you will have the opportunity to meet them both over the coming months.
Merry Christmas and happy New Year
I want to thank you all for your continued support and commitment to Action Duchenne throughout 2023 and I wish you all a joy-filled Christmas and a happy New Year.
