As the sunshine begins to make a welcome appearance, I hope you have all had a wonderful May bank holiday and are looking forward to time together with family and friends over the coming Summer.
It has been over two years since we launched National Lottery backed ‘All-through Support’ pilot programme, a much-needed project focuses on helping families to live with the condition. Duchenne is an incredibly complicated condition. Diagnosis is life-altering – children, young people, adults living with Duchenne, parents, siblings, grandparents face progressive and demanding care needs and increasing challenges during periods of transition. A lack of awareness of this rare condition can result in exclusion from education and workplaces, social isolation and healthcare that fails to meet needs. Action Duchenne will continue to support every child, young person, adult and family throughout their Duchenne journey. I and our support officers are with you for as long as needed; combatting the isolation, fear, and frustration that you may feel.
I have been excited by the relaunch of our online support groups at the beginning of this month. Inspired by the success of our DAD’s group, we now have Time Out for Duchenne Mum’s, Grandparents Together and Open Space which welcomes anyone impacted by Duchenne. These groups were all well-attended and following their first meetings have established WhatsApp groups to enable more peer to peer support in between the monthly meetings.
As a community-led charity, we have become experts in supporting families, in meeting them where they are, being with them in their darkest moments and in helping them to live the best lives they can alongside the challenges a Duchenne diagnosis brings. We are proud to offer this support at every stage of the journey, from the moment of a new diagnosis to end of life and bereavement, and at every stage in between. As always, our team are always here for you.
Filling the Gaps
We continue to address the gaps in support for our families. We’ve been pleased to have now delivered our third online group counselling programme for parents and carers. Our Transition to Adulthood programme aims to address some of the lack of support and isolation felt by young people as they move into adulthood, connecting them with others and providing them with the knowledge and experience they need to realise their full potential. We continue to develop this, moving towards a mentoring project where young people will learn from peer support given by some inspiring young men living and thriving with Duchenne.
Our Contact families with disabled children funded ‘Turning Point’ project for 8 – 14 year olds is working to help address the unmet needs of those making the change from primary to secondary school, and often experiencing significant changes in their mobility at the same time. You can register for our next online Turning Point session which will be held on Wednesday 22nd May, run by The Money Charity who facilitate interactive workshops encouraging young people to think about managing their money and budgeting. Our Yes I Can sessions with The Money Charity have been really well received and I am sure that our younger group will get a lot out of it too!
Our supporting families network encompasses medical, education, social care, and the voluntary sectors. We have established referral pathways and collaborative working relationships. The team here is constantly working to understand where the gaps in services and support are, and to further develop our services to meet them. Our commitment to our community and to providing the support they need remains unwavering.
Continuing Science Education
We’re proud of the constructive relationships that we build on 20+ years experience with treatment manufacturers, funders, regulators and providers. Our Science Education programme continues with our regular webinars and so far we have had Duchenne experts on learning and behaviour, neurodiversity, grief and trauma, physiotherapy and drug development. Our next webinar will take place this Saturday 11th May at 5pm with Dr Vasantha Gower from Evelina Hospital. She will be talking us through what happens in an emergency situation with Duchenne and I hope you will be able to join us. None of us want to think an emergency situation will happen to us, but this webinar will give you the confidence to know that you can handle whatever happens.
Following this, on Tuesday 28th May we have a webinar about the BIND (Brain Involvement in Dystrophinopathies) study. The study aims to to better understand how DMD/BMD impacts learning and behavioural challenges and from thisto create tools on how to evaluate and treat these brain comorbidities. By doing so, BIND aims to pave the way to better treatment, care, and outcomes for people living with DMD/BMD. This webinar will be deliverd by Professor Fransecso Muntoni, Coordinator for the BIND Study and Dr Anna Kolesnik as a BIND research fellow. Don’t miss this amazing opportunity!
Continuing The Lottery-backed pilot (2021-2023), I am delighted that we have begun preparations for our 2024 Science on Tour Workshops. We have successfully delivered 45 educational workshops and released 48 Science Live videos over the past two years, all with the aim of providing science-based information about Duchenne, in an accessible, manageable format. Evaluations showed that families gained confidence in managing Duchene, asking questions of clinicians, and felt more connected to the Duchenne community. However, neither local authorities nor schools have yet received such educational programmes and awareness of the condition remains limited. For me, nothing compares to being able to meet families and members of our community in person, to chat and share experiences and knowledge. If you’d like to register your interest in attending one of our workshops, please follow this link.
Help us to continue our much-needed work
To enable us to continue working towards our vision of a world where lives are no longer limited by Duchenne muscular dystrophy, we have worked hard to create a new fundraising strategy. Our community fundraising is central to our charity and we are proud that 93.8p in every pound raised is spent on charitable activities. As well as raising funds and awareness, it allows our community to work together to gain strength and hope towards a better future. I am constantly amazed and inspired by the commitment and creativity of the people who chose to fundraise for us, either through an organised event or one they’ve done themselves. Many of our fundraisers have a personal connection to Duchenne though a friend or family member, and find that organising or taking part in an event can channel some of their feelings of grief or helplessness into a more positive place. Others have benefitted from the services we provide and want to give back and to ensure that families in the future will have access to everything they need.
Having had the opportunity to take part in the Vitality 10K in September 2023 alongside a team from Action Duchenne, I know both the hard work and the reward that comes from undertaking a challenge. I also have the immense privilege of seeing the direct impact of the money that’s raised and the tangible difference it makes.
Join Team AD for the Parallel Windsor 2024
This year, Action Duchenne are proud to be a Parallel charity partner for their flagship Festival of Inclusivity, held on 7th July 2024 in the grounds of Windsor Great Park and staged on the iconic Long Walk. We want to use this amazing opportunity to bring our community together and to get Team AD out in force! We’d love you to join staff, trustees, young people living with Duchenne and their families to take part in a truly inclusive, accessible and family friendly event.
Challenge events
There are 5 challenge events to choose from: 100m, 1K, 5K, 10K or the SuperSensory 1K. Walk, push or run – there are no cut off times. Mobility aids and assistance animals are welcome, where everybody can ‘Start Together, Finish Whenever’. Participation can be in-person or remote, and everybody who starts receives a medal and t-shirt.
Festival of Inclusivity
The fully accessible festival offers a huge range of activities & entertainment: Live Music, Arts & Crafts, Active Lifestyle, Inclusive Sport, Storytelling, Cookery, Wellbeing & Dance and lots of Family Entertainment. The Festival also includes a Quiet Space,Sensory Zone and Family Picnic Area, supported by accessible facilities, on-site parking and medical provision.
Conference 2024
Finally, I am excited to share that Action Duchenne Annual International Conference 2024 conference planning is in full swing, and we’ve already secured commitments from 14 remarkable keynote speakers who will undoubtedly elevate the conference with their expertise. The response from our community has been incredibly heartening, with 70+ families expressing a keen interest in attending, before ticket bookings open on 1st June. There are many opportunities for YOU to be involved over the two days, Friday 8 and Saturday 9 November 2024. As well as volunteering opportunities for over the event itself, we are also looking for anyone who can help us in the lead up. You could play a significant role in ensuring the success of our conference through sponsoring our Hang Out activities for young people living with Duchenne and their siblings, donating an amazing raffle prize, coming up with fundraising ideas and even helping us with some of the administration in the build up. If you could help, or you now someone who can, please get in touch with us: volunteer@actionduchenne.org
As we look forward to longer, sunnier days, please remember that we are here for you and your family wherever you are on your journey. I truly believe that by coming together as a community, we can make a real difference in the lives of families, whatever challenges they are facing. Whether it’s lending a helping hand, offering a kind word, or advocating for positive change, our collective efforts have the power to create lasting impact and bring hope to those who need it most. Together, we can build a stronger, more resilient community where every family feels supported, valued, and empowered to thrive.
