Blog by Florence Boulton, National Director
This month marks the anniversary of the day I joined Action Duchenne. I remember it well, at the Annual General Meeting, I met the wonderful team again, the dedicated trustees and heard about our plans for 2020 and beyond.
Little did we know that weeks later, the UK would be in lock-down, with Action Duchenne launching our largest emergency support project ever. I am proud to have led the team this year, through the complexities of remote working, home schooling, the decimation of our traditional income streams, the exponential demand on our services, new funding, new projects, and a completely new landscape for the economy.
A big thank you
Thank you to each of you for helping to make this year a success for Action Duchenne, and for me personally. Thank you to the Duchenne families who have welcomed me so warmly, and inspire me to do my best for the team and for the community. Thank you to my peers and mentors who have helped support me to carve the charity and make the right decisions. A big thank you to the pro-bono consultants who have given their time and expertise so freely, enabling our charity to grow and prosper this year.
We have set the foundation for success, and have proven ourselves to be resilient, mirroring the resilience of the children, young people and adults living with Duchenne muscular dystrophy.
Rare Disease Day 2021
February is a busy month in our calendar, with social media channels bustling with stories and videos from people living with rare conditions. Raising awareness of what life is like living with a rare condition is a key aim of Rare Disease Day.
Over the next fortnight, and culminating on Sunday 28 February, look out for the #rarediseaseday posts online and support the campaign by sharing, liking and getting involved.
Over the past year, I have had the privilege of getting to know the team behind Rare Disease Day, the charity Genetic Alliance UK. Their work not only raises awareness of rare conditions, but also improves access to care, treatment, information and support. We are proud to collaborate with fellow charities, such as Genetic Alliance UK, at the benefit of the Duchenne community. Thank you to the team for all your hard work and dedication to the rare disease and Duchenne community.
Continuing to support you
Duchenne families are the absolute focus of our work here at Action Duchenne. Most families have been in lock-down for a year now, with many remaining in isolation throughout. Supporting these families has been a constant priority, and this month was no exception.
We launched a new virtual science communication channel ‘Duchenne Science LIVE’ where families can find out about current research developments and catch some extra special shows along the way. So be sure to ‘smash the like button’ and ‘hit that bell’ on our YouTube channel here!
We held two sets of online events, the first was a double bill of support sessions with our Support Officers and a trained counsellor where families were able to share how they are feeling and support each other. The second set of events welcomed the Paediatric Clinical Psychologist, Dr Natalie Truba who shared her expertise about learning and behaviour in Duchenne.
The techniques and practical advice Dr Natalie shared are extremely helpful and empowering. I highly recommend watching both the webinar and Q & A, they will be a few hours VERY well spent.
Stay safe and speak soon
Florence
Rare Disease Day 2021
