Blog by Florence Boulton, National Director – written in Cambridge just after we finished delivering the Action Duchenne International Conference 2021.
After months of planning and working with our speakers, partner organisations, pharmaceutical companies, exhibitors and our Duchenne families, we successfully delivered our 20th International Conference to over 400 people/families from more than 40 countries on the weekend of 13th and 14th November 2021. Our user-friendly virtual platform enabled the UK and international community to engage with a large variety of sessions ranging from Standards of Care with discussions on steroids, physiotherapy and cardiac care, Clinical Trial Updates and Duchenne and the Brain, as well as evening socials. Please have a look at some photos on our website showing highlights from this weekend.
“It was really insightful, thought provoking and moving.” – Newly diagnosed parent, conference 2021.
“I feel like there is a family out there (Action Duchenne) who cares about supporting families like mine.” Duchenne Parent, conference 2021.
Nerves and pride
It is always nerve wracking putting on such a big event, pulling all the different strands together and putting all my team’s hard work into practice.
Creating a sense of community is central to our work as a charity. We are very aware of the challenges that lock-down has presented to our families over and above those of the general population. We know that many have felt the isolation much more keenly. As I watched our staff team and volunteers come together this weekend to create our socially distanced conference hub, testing technology and setting up equipment, I was filled with immense pride alongside the butterflies in my stomach. The enthusiasm, ambition and drive to put on the very best event possible emanated from every person. Any nervous anticipation was overtaken by the powerful knowledge that we were about to have an incredible weekend.
We made sure that each of the session panels gave a range of perspectives, from parents, patient advocates and those living with Duchenne alongside clinicians and experts. The breadth and depth of lived experience shared was one of the highlights of our conference for me. It truly validated the powerful voice of our community.
I hope this conference is helpful as you move through your journey of living with Duchenne. There are advocacy groups, neuromuscular centres, families and friends who are here for you, to support you every step of your way. You are not alone in this journey. Always remember Action Duchenne are here for you.
Coming together
Collaboration is at the core of everything we do at Action Duchenne. We focus on things that are best achieved by working together. We continue to involve the community through active working groups and committees. Over the last two years we have focussed on building our engagement in all areas to respond to these needs.
I would like to express my wholehearted thanks to our wonderful Ambassador, Jonny Gould, and to our Patrons, Harry Hill and Helena Bonham Carter for their ongoing support to the charity and the Duchenne community. Despite their exceptionally busy lives, both have given us everything we asked for on our ‘wish-list’ from messages of support to videos and competition prizes.
Our Patron, Harry Hill opened the conference
A big thank you to the UK and International Duchenne community, in particular the support we received from: Jon and his team at Pathfinders and Cat and her team at Muscular Dystrophy UK who helps us jointly deliver the ‘Living with Duchenne’ session. Thank you to Elizabeth and her team at WDO for helping to amplify (conference promotion); Pat at DDMP (shared our conference with their networks in the US) Jayne at Generic Alliance and Phillippa at Duchenne Family Support Group (shared our conference with their networks in the UK).
Thank you to our sponsors and exhibitors for their financial commitments which enable all UK and International Duchenne families to attend this event free of charge.
As usual, I would like to express my thanks to our team of skilled and knowledgeable volunteers, trustees and colleagues, some of whom are Duchenne parents and their passion is so evident and is infectious. Thanks for your precious assistance and support. We now have a team of 18 regular volunteers giving their time and expertise on a range of tasks, from website, HR support, impact measurement, webinars, writing blogs to researching fundraising opportunities. Many of them joined us this weekend both in person and virtually to enable this conference to run so smoothly. Thank you!
I am extremely proud of the partnerships we have forged with corporate partners and grant-making bodies. We are grateful for their ongoing financial support and for the voluntary donations from individuals, groups and companies. All of this makes it possible for us to carry forward our much needed work.
Meeting our Ambassador
Over the past two years I have been regularly communicating with one of our charity Ambassadors and master of broadcasting, Jonny Gould. Jonny has made a huge contribution to our charity over the period of lockdown with his brilliant “Music and Me” podcasts. Last week after many phone calls and video chats, I finally had the opportunity to meet with him in person.
The warmth, humour and passion for the Duchenne community he exudes during his online sessions was only more obvious and engaging in person. It also confirmed how invaluable his support is in many aspects of our work. In particular he is passionate about our much-needed project “All-through Support” which has been recognised and supported by the National Lottery. I know that he will help amplify the support project over the coming months.
The voice of our community
COVID-19 had a major impact on all charities, however, we 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’ – we have paid off all of our pre-pandemic research funding obligations and will resume this cautiously. We will continue providing outreach to the Duchenne community and funding science education and research projects to help Duchenne young people and adults with the long-term goal of finding a cure.
As we begin to put together feedback from this weekend and to plan our international conference for next year, we have so many exciting projects in our pipeline. We are building an infrastructure to ensure that we have the team in place to deliver our much-needed ‘All-through Support’ project successfully for the next two years and beyond.
‘All-through Support’
Over the next two years, we will continue, create and deliver projects which will improve the way Duchenne families receive support, bringing our support to as many people as need it.
We will do this by;
- Supporting newly diagnosed families from day one of their diagnosis. We will work with clinics to make the referral process streamlined and provide assistance to their teams.
- Helping families make informed decisions through delivering science education workshops to young people, adults and their parents.
- Setting up localised peer-to-peer support networks to provide families with a course of support sessions.
- Working alongside with our partner organisations, we are:
- offering transition support and skills training to young people living with Duchenne.
- Creating support materials for grieving families, and peer-to-peer systems and regional support groups for these families.
This project is ambitious, but we know we are best placed to deliver this to the Duchenne community. Although The National Lottery is supporting a portion of our much-needed ‘All-through Support’ project, we will be seeking funding from Major Donors, Corporate Partners and other Grant Funders for the remaining portion. We will be setting the foundation of this significant project in England (in line with the National Lottery grant guidance) and aim to roll the project out to the devolved administrations so that all families in the UK can benefit from our ‘All-through Support’ project. Please reach out to me if you would like to know more about the project.
Christmas is coming
Looking forward to the holiday season, we are very excited to be able to offer our families the experience of a virtual visit with Santa. This truly lifted spirits during lockdown last year and the feedback we had was beyond our expectations. No one deserves festive magic more than the amazing families we support!
Sebastian and Toby (and bunny!) enjoying talking to The Elves before the Big Man himself in the Grotto 2020.
Thank you and save the date
Finally, I want to thank everyone who was involved in this year’s conference and our supporting families projects over the last 18 months. The immense strength of the Duchenne community truly can be felt in force during the weekend. With this strength and the support you give us, we continue to build on our life changing work. It would not be possible without you. We are here to serve you, our Duchenne community. My team and I are ready to support you whenever you need it. Please stay in touch with us: info@actionduchenne.org
I am looking forward to meeting you again soon. Meanwhile, plans are underway for the Action Duchenne International Conference 2022. In the meantime, please save the date for next year’s Conference which will be held on the 11th and 12th of November 2022.
Warmest wishes,
Florence
World Toilet Day 2021
