A message from the National Director, Florence Boulton
It was a relief this weekend to hear the Prime Minister announce the start of a process for easing lockdown restrictions. We know that this will be a long, slow process, especially for families living with Duchenne, and we will keep reviewing our recommendations and advice for the Duchenne community.
These are tough times for everyone, but for many of us, it has also been a chance to enjoy spending time with our families. Over the last few weeks, all of us have been adjusting to the new reality of working from home, the added strain of social distancing, caring, trying to home-school and cope with changes. There have been enormous challenges, but also some bright moments over the weeks. Thursday night at 8pm is a favourite for my daughter, as all the neighbours step out onto the doorstep to applaud our brave key workers. I’m grateful to everyone who has been supportive during this difficult time: family, neighbours, the Action Duchenne team and the Duchenne community. Thank you!
Supporting you
My team have been watching developments closely and are constantly considering how we can use our resources to positively support you and each other through this challenging time.
With this in mind, we have developed a series of Duchenne webinars to help support you and your families. I have been overwhelmed by the feedback received so far. It shows how our wonderful families appreciate the relaxed, informal atmosphere, as a safe space to ask questions and share experiences.
We are also contacting all our families directly, offering support and a listening ear. If you need anything from us, please ask and we’ll do everything we can to help.
Fundraising
Like many other charities, Action Duchenne is currently facing an enormous challenge as our fundraising has been decimated during COVID-19. We are working tirelessly to continue to deliver our front-line work, including supporting over 1,000 Duchenne families every year, funding ground-breaking research and educational programmes as well as ongoing campaign projects.
As always, our team continues to proactively seek funding opportunities to safeguard our vital work, including the following projects which have developed during lockdown;
- Make the most of your time at home – great ideas to help you kick-start your own fundraising from home, including a wine/beer/gin night, online quiz and how to de-clutter and donate!
- Postponed events online fundraising – a special shout out to the participants whose events have been postponed and who continue to fundraise throughout lockdown. Your fundraising is testament to your hard work, determination and dedication to our cause, thank you all so much!
- The 2.6 Challenge – The Save the UK’s Charities Campaign took place instead of the iconic London Marathon. Thank you to our brilliant fundraisers who each took the opportunity to take on unique and varied challenges, raising over £2,000. If you are interested in holding an online workout/activity and fundraising for us, please take a look here.
- Love of music – This month saw the welcome return of Jonathon Inkin with his inspirational charity single ‘Horizons’. Jonathon and his sister Louise have worked so hard to launch this track, along with the captivating video, and we’re so proud that you are raising money for us, thank you!
- Funding applications – This week we received the news that our application for a micro-grant of £400 from the Neighbourly Community Fund has been successful. I am also delighted to let you know that the Aviva Community Fund application for the project ‘Supporting Families Making Impossible Decisions’ has been approved. The project will go live on 3 June and we will update you with how you can help us over the next few weeks.
Volunteers
We recently put a call out to our community for volunteers to help our skeleton staff during lockdown. WOW, we didn’t imagine the number of volunteers who would step forward to offer their time! It has been staggering and we’ve had to devise new systems to train our new Volunteer team members courtesy of Zoom. A special thanks to Gemma Stunt, Jess Young, Tia Jeewa, Maggie Gordon, Bryan Purdue and Lizzie Deeble. We are so grateful for your valuable support and help.
Thank you and best wishes
I would like to close my blog with our heartfelt thanks to our former colleague Iain Clarke, who has moved on to spend more time with his lovely little family. Iain has dedicated 9.5 years of his working life to Action Duchenne and has helped many families during his time here. Iain has turned his hand to a range of roles within the charity, from building relationships with partner companies to campaigning and fundraising, he has truly left his mark on the community. We all wish you the very best of luck in your new home and look forward to keeping in touch.
And finally, I join my team and the Board of Trustees to thank you all for standing behind us during this difficult time. We are here for each and every one of you and send our sincerest best wishes.
Florence
