Before I start my usual blog this month, I wanted to acknowledge a Duchenne family who have been through immeasurable devastation this week. On behalf of the entire Action Duchenne team, I send light, love and strength to you all.
Volunteers
Last week, we celebrated Volunteers’ Week by sharing a number of quotes from our amazing volunteer team, an insight into why they do what they do.
I volunteer for Action Duchenne as I like to give back for the support and advice they have given me and my family following our daughter’s diagnosis as a manifesting carrier. I am so amazed at the kindness and positivity of the charity, volunteers, and parents & I’m grateful to be part of such a fab team. If my small contributions can help Action Duchenne support other families and complete vital research, then I feel I am playing some small part.
Jess Breeze | Social Media Volunteer | Duchenne Mum
I wanted to give a heart-felt thank you to each and every one of our volunteers, the Action Allies, the Trustees, and the Sub-Committee teams. You all play your part in delivering our core objectives and I am grateful for the work and dedication you give to our charity, thank you.
Objectives at our core
The support we offer to Duchenne families at every stage of their journey, coupled with funding innovative research into Duchenne muscular dystrophy, and educating families about the complicated science behind Duchenne is truly crucial to our community.
As you know, despite the decimation of our traditional community fundraising income through 2020 and into 2021, we tried hard to keep our core charity objectives alive. My team continues to work hard and effectively, delivering our vital work despite the immense challenge of the past 18 months.
We have performed well over the last 12 months under the COVID-19 financial regime. We met our financial responsibilities and even delivered a small surplus. However, these temporary arrangements will come to an end shortly. I will be working closely with our Treasurer and Fundraising and Support team to develop a long-term financial plan which we can work with our partner organisations to deliver.
I am delighted to let you know that traditional community fundraising has picked up this month. This is a real-life indicator of the effectiveness of our work and I have been so happy to see so many of you choosing us as your charity for your fundraising activities. I have relished watching your fundraising journeys unfold, with a real mix of people getting involved; from Duchenne siblings to friends, families, schools and work-places.
One story stood out to me this month, and I was in good company, as thousands of you read and commented on the heart-rending story of a Duchenne Mum who had taken up running after her son passed away.
Kindness is our desire to do something to help others that is motivated by genuine desire to make a positive difference.
Being kind can help others feel good, it creates a sense of belonging and reduces isolation and helps to keep things in perspective. I am pleased to share a quote from one of our amazing fundraising families;
I started fundraising one year after Niall was diagnosed and have continued the last 14 years. It keeps me focused, and I feel that I’m helping Niall and other children affected with DMD knowing that all monies raised will go into research in the hope that someday soon a cure will be found for our boys. Fundraising has become a huge part of my life.
Deborah O’Doherty | Duchenne Mum
Confusion, extreme sadness and loss of direction are always there but charities like Action Duchenne give us and other families hope of a bright future.
Dan Brown | Duchenne Dad
Myself and my team are focussed on carefully delivering what is needed, and we are knowledgeable about how best to ensure the money you raise or donate, is spent wisely. I hope the work we have done during lock-down and beyond has given you all the confidence in our leanness, steadfastness, stability and professionalism.
What’s next?
This coming year my focus for Action Duchenne will be all about working in partnership. My mission is to establish a more solid collaborative way of working with our partner organisations in the UK and globally. Working together will benefit our children, young people, adults and their families at every stage of their Duchenne journey, helping to improve the lives of the communities we serve
Last month we launched the first of our ‘Music & Me’ podcasts, hosted by our wonderful Ambassador and master of broadcasting, Jonny Gould. Indy Rock guitarist and front-man Alex James Kennedy kicked off the series, with his moving and deeply inspirational story of how he adapts his musicianship as his muscle wasting condition progresses. Look out for the next instalment from Jonny over the next few weeks.
Following the successful 2020 virtual Action Duchenne International Conference, this year’s event will again take place virtually. Although we are itching to see everyone together in the same room, we know that this year, it is safest for everyone if we deliver the conference to you in the comfort of your own homes. We have learned from last year what went well and what we could improve upon. Using the most up to date technology, this year’s event will have a new look and feel, with core aspects at its core; updates on research and trials, the brain and learning, standards of care and living with Duchenne. The Conference 2020 was attended by over 50 nations, over 700 registrants, more than 60 global expert speakers and the content received more than 4,000 unique views. Be a part of this global event, hosted by our charity, this November 13 & 14th, tickets are free for all Duchenne families and will be available to order soon.
We have already been in touch with the families registered to attend the first two legs of the ‘Duchenne Science on Tour’ programme, which we unfortunately had to postpone last week, due to COVID-19 restrictions. We have been able to offer some of these families alternative locations and will be setting up new dates for these venues across the summer. For now, I am delighted to announce THREE new dates due to unprecedented demand; 24 and 25 July in Birmingham and 10th September in Derry, Northern Ireland. Please do book your places by following the link below;
Internally, we are now in a position to revisit some of our routine work that we had planned before COVID-19 arrived. We are taking the time to nurture and grow our team and volunteers, to build on our successes, along with improving our internal systems to make us work smarter and more effectively. This all takes time, and it is important that I am realistic with you, however, I am pleased to share with you that we are not only recovering but are also starting work on brand new projects.
I wish you a healthy and happy month, please remember that we are here to support you at all times.
As always, keep safe and thank you for reading.
Florence
Duchenne siblings, we see you
