A blog by Florence, National Director
As we move toward the end of 2022, I’ve been looking back on the year we’ve had and reflecting on both the challenges and the successes, the hard times and the good, the ups and the downs.
As the nation has been taking the tentative steps back from the isolation caused by the pandemic, we’ve each been seeking togetherness again. While this has brought joy at relationships rekindled, we have also experienced loss. At a national level the death of our longest reigning monarch, was followed by a national time for mourning and reflection. At a personal level many of us have felt the loss of a loved one, made more acute by the otherwise returning of ‘normality’ as covid restrictions have lifted.
Our thoughts are with you
We are very sorry to hear that Mark Chapman has sadly passed away. Mark lived with Duchenne and was a huge part of the Duchenne community and known to many of you. He was an active, regular participant and presenter at the annual Action Duchenne conferences and supported many of our projects like Takin’ Charge which worked with young men with Duchenne. He and Jon Hastie worked closely together and in 2014 they co-founded Pathfinders (Pathfinders Alliance). Most recently he again used his considerable knowledge to support our ‘Yes, I Can’ transition to adulthood project. We will miss and remember you Mark. Thank you for inspiring others to achieve independence and living fuller lives.
The last few weeks have seen a number of losses with the Duchenne community and we are thinking of all of their family and friends at this very difficult time. Please don’t hesitate to reach out to our support team on info@actionduchenne.org/07535498506 if you’d like to talk.
Collective and personal loss alongside the joy of coming together once again has been reflected in the work we have done this year. We have continued through the many changes around us with lots of positive steps forward, some inevitable steps back, but with a renewed strength underlying it all.
All-through Support
Collective and personal loss alongside the joy of coming together once again has been reflected in the work we have done this year. We have continued through the many changes around us with lots of positive steps forward, some inevitable steps back, but with a renewed strength underlying it all.
Front and centre of our work in 2022 has been our National Lottery funded all-through support project. It encapsulates the service we strive to provide for our community on all stages of their Duchenne journey.
Our Science on Tour programme made an incredibly successful return to being quite literally “on tour”. Alex and Mehreen personally visited 22 different locations all over the UK and Ireland, providing a great platform for the Duchenne community to interact with each other, share and learn from their lived experiences. I very much enjoyed attending workshops in Birmingham and Newcastle and witnessing first hand the much needed in person support that Action Duchenne provide.
Meaningful conversations and insightful discussions were held and so many of those who attended the workshops expressed that they had learnt something new.
“I think that today was brilliant I have been googling forever trying to understand what’s happening to my sons body and this today has taught me everything I was looking for.” – Duchenne Mum, Belfast
I was also honoured to host our virtual Newly Diagnosed event in October – the event gave families an introduction to Duchenne muscular dystrophy, adjusting to the diagnosis, building a team around you and an overview of Duchenne research and clinical trials. I am so pleased that our weekly online Hive sessions and our peer-to-peer support groups have continued to offer connection, understanding and a vital lifeline for many of our families.
The ‘Yes I Can’ transition project for young people living with Duchenne began in June this year, and we ran 12 online expert-led sessions along with two residential weekends at the Calvert Trust. This was the first step in creating a network of young people, developing much needed support and tackling the significant challenges they face in transitioning into adulthood.
We further built on this during our ‘Hangout’ at the Conference, where the teenagers in our community had the opportunity to take part in many activities including making a film in a day. We are so proud of this film which shows the ambitions and dreams of our young people.
My highlight of 2022
My personal highlight of the year was our International Conference, our first in-person conference since 2019. The theme of ‘Educating, enabling and including ran throughout the 4 streams of 35 sessions. The world class expertise coupled with the lived experience from people living with Duchenne resulted in discussions, sharing and exploring topics which were inspiring, uplifting and transformative. For me it summed up the theme of 2022, bringing our community back together after such a prolonged period of isolation. I am incredibly grateful that the support from our valued sponsors allowed us to once again offer free conference tickets to all UK and international Duchenne families to enable many more to be part of this much-needed event.
“It was such a well organised event. My husband and I can’t thank Action Duchenne enough for organising this event. We would definitely be in a very different space mentally and emotionally had it not been for the excellent support you guys provide us. The opportunity to talk to the top minds in Duchenne world is something money can’t buy and for that we are immensely grateful.” Tanvi, Duchenne Parent and Action Duchenne Volunteer
Thank you
I want to take this opportunity to thank all of you all for the huge variety of fundraising events that have taken place this year. There have been so many highlights – we began the year on a high with Duchenne family and long-standing Action Duchenne supporters, the O’Doherty’s of Derry, Ireland announced in January that they had raised an incredible £21,650 following Dr Gavin McAteer’s Mizen to Malin Head challenge in September 2021.
Our Community Support and Fundraising Officer Victoria saw our amazing marathon runners smash their goals in the London Marathon, I was personally lucky enough to watch the Action Duchenne team complete the Vitality 10km in what was a brilliantly accessible event.
We’ve had summer garden parties and Christmas wreath making workshops. We were the chosen charity for the Great British Beer Festival which was a brilliant opportunity to raise money and talk to people about our charity and the work we do. Our team of staff and volunteers truly did us proud!
Changes and looking forward
Our staff team this year has seen changes and we have welcomed new members to our Action Duchenne family. I would like to thank those who have moved on to different things for the contribution they have made to the communit. As we continue to build a strong team to take our projects forward, we carry with us the legacy of everyone who has been a part of our vital work.
We have exciting new projects in the pipeline such as our programme for younger children moving onto secondary school.
Thanks to funding from Pears Foundation, we’ve been awarded a grant from disability charity Contact to enable us to begin the development of a project which will support children through this challenging time. We continue in our ambition to create and deliver projects which will completely change the way Duchenne families receive support, bringing our world-class support to as many people as need it.
Adjusting to change takes time, but can ultimately lead us all to a better place. That is my wish for us all as we look forward to 2023. Our work continues to be ambitious and challenging as we plan Science on Tour travelling to more destinations and a further 2 transition programmes with capacity for twice the number of young people. This programme will build on our existing support for newly diagnosed families; our assistance to those facing the end of life; and, the help we offer in dealing with bereavement.
I am constantly in awe of the creativity and talents of our community and humbled by the effort and commitment that so many of you show. I want to personally acknowledge the difference you make in your support of our charity, and I look forward to learning from you, deepening my experience. I hope to have the opportunity to meet you at future events. Please do not hesitate to drop me a line at info@actionduchenne.org. Thank you!
As the National Director of Action Duchenne, 2022 brought a lot of opportunities for our progress; and the credit goes to our dedicated team of innovative and creative people and our invaluable supporters. I look forward to steering our charity to continue to steadily grow in the long term. I want to wish you all a very Merry Christmas and a Happy New Year. Thank you for an amazing 2022 at Action Duchenne!
