A blog by Florence Boulton, National Director
(Robin by Duchenne Grandad, Julian Smith jpsart.net)
As the nights are drawing in and the temperature is falling, we are approaching a unique festive season this year. Many of you have felt the strain of the second lockdown, perhaps due to the darker days, or the psychological effects of being in isolation again. Perhaps we are all feeling that this should be an exciting, celebratory time of year and that we simply won’t be able to do this in the traditional way this year.
I hope that, however you are spending your time this holiday, that you are safe and well, and that you have everything you need. Action Duchenne is here to support you with advice and sign-posting to find help, should you need it.
My review of 2020
When I wrote my first blog as National Director of Action Duchenne it was March 2020 and we were on our knees. Wow, what a difference ten months can make! Whilst the last few months are not a standard sample by which to judge anything, lock down has reiterated to me that there are so many vulnerable young people, adults, and families needing our support and help in particular during these strange and difficult times.
At the end of my ten months as National Director at Action Duchenne, I feel extremely proud to be a part of the team so firmly rooted at the heart of your community. This year, I have built a dynamic, committed and professional team of staff, volunteers and trustees.
Together we are delivering the highest quality support, innovative research, groundbreaking educational projects and amplifying the voice of the Duchenne community.
Big plans
I have focussed our efforts, resulting in securing new income streams and am working closely with grant funders, corporate partners and major donors. Over the forthcoming months, we will be bringing you Duchenne Science LIVE, the Big Ideas Research Fund projects, Science on Tour 2, volunteering opportunities, information and support webinars, peer to peer support groups and more updates from our campaigning work.
Over 2021 our aim is to help you understand the complex research in Duchenne and help you feel more empowered and in control of the decisions you have to make.
A challenging but exciting outlook on 2021
There is no doubt that 2020 will go down in history as one of the most difficult we all will have experienced in modern times. Here at Action Duchenne, 2020 has been a year of smart working, creativity, solidifying our aims and building strong foundations. In 2021, we look forward to you accompanying us on our journey of growth and improvement. After all, it is YOU that is the inspiration for all our dedication and hard work.
Of course, I am very aware that a lot of what I am talking about in this blog is my personal Action Duchenne journey. In my better moments during the pandemic, I am trying to use the situation to remind me of the blessings that I still have, and to look forward to the ones that I can still receive.
I am equally aware how it could be so much worse than it is for some, with the extent of the disruption that COVID-19 has brought, and the length of time it is persisting. I think it is okay not to be okay sometimes, to acknowledge our struggles and express our grief to our colleagues, families and friends.
My Action Duchenne journey also makes me reflect on what I value, and where I am investing my time and my energy. I have also realised that although we can’t control that decision, I am in control of ensuring I am prepared if the worst happens. When so much is stripped away, it can help us be more focussed with a deeper understanding of our internal drive. COVID-19 will eventually end, and I hope when it does, I will be a stronger person than when it began.
Thank you for your support and engagement. I wish you all a happy, healthy and safe holiday and new year.
Florence
