When the National Director role at Action Duchenne came up last November and I started reading about all the work the charity does, it was inspiring to hear about the real difference the charity is making. Meeting families, trustees and team members at the International Conference, gave me a great insight into the activities. I was so proud of what a great team we have, fighting for support for our young people and their families, all with such dedication and patience.
One month into the role, I have hugely enjoyed my time here. Action Duchenne is a great organisation with a strong mission. I am grateful to our trustees, for being so generous with their time. I have gained huge benefits by tapping into their invaluable insight and expertise.
When my role was announced in February, an experienced chief executive kindly offered mentoring, and this was indispensable for getting quickly up to speed. Having a great network I could draw on that has been enormously valuable, helping me to gain an better understanding of what might trip us up and what I should be focusing on in my first few months – that has really broadened my thinking.
In my first month in the office, we have developed a growth strategy and financial plan for the coming year. In a resourceful small charity, I have to wear so many hats – strategic planning, fundraising, operations, finance, HR etc. But those are also good opportunities to be more responsive and quicker to change. I am confident I can achieve our goals with our creative and dedicated team, and I am encouraging them to try new ideas.
Inspiring programmes
Since I started in February, a few exciting research projects, educational programmes and support initiatives have really attracted my attention and I thought with this first blog it might be helpful to set out some of what I have discovered as particularly inspiring:
Each year the team supports over 1,000 families at all stages of their Duchenne journey, all of which have benefited from our expertise, understanding, practical help and empathy. We focus on providing bespoke, unique support to families across the UK to help families gain hope, knowledge and power to navigate their journey.
We have offered our Duchenne Science on Tour sessions to everybody with an interest in Duchenne. On 5th February I joined the tour in Luton and I was delighted to have the opportunity to meet Duchenne parents and grandparents, healthcare professionals and a school SENCO. These events combine interactive demonstrations and real experiments to help families understand the research and clinical trials process and the feedback we’ve received from attendees has been really positive.
Another is our work on a Rare Disease Day written appeal that we sent to over 1,000 supporters. Our work to date has seen over £10m invested in ground-breaking research, educational programmes and campaigns. With the help of our supporters, we will be able to fund innovative, focused research that could create a future free from Duchenne muscular dystrophy.
Finally, the importance of the UK DMD Registry that we curate, which plays an important role in bringing clinical trials to the UK, providing information for research projects and can help to recruit participants to clinical trials and research projects. Action Duchenne and the other UK charities are currently collaborating on a plan to replace the current UK registry with a modern and fit for purpose alternative
Making a difference for families
In my first month at Action Duchenne I have learnt it’s really important to get to know all of our team, our community and the people our charity supports. That’s what keeps me going when things are challenging. I take courage from some of our amazing supporters with the visible differences I have seen being made since I started.
I wanted to close with some really inspiring words from one of our wonderful supporters, a Duchenne parent who has gone above and beyond to support our work from skydives, abseils, walks, runs and more, raising significant funding to enable research; she recently said to me: “I have to be brave every day, and do what needs to be done to make change, for myself, and for my son.” That’s what we’re here for and I’m proud to be part of Action Duchenne’s journey.
Florence Boulton, National Director
Raising the profile of Duchenne with Primary School pupils on Rare Disease Day
