The power of our community
Our team up and down the country continue to do great job delivering the Science-on-Tour workshops; building contacts with specialist clinical centres; supporting families by building peer-to-peer support groups; supporting children, young people transitioning to adulthood, supporting community events and fundraising activities and implementing the work plan for Science Live and our 2023 Annual International Conference. I want to share some inspiring words from Ruth Taylor, one of our wonderful supporters, a Duchenne mother who has gone above and beyond to support our work through raising significant funding to enable research and supporting families projects. Ruth recently told me:
“Our journey over the last 3 years has been difficult, some days are worse than others. Hospital appointments are draining. Ongoing research, support, fighting for services is never ending. This is our life. I have gone through so many ups & downs but time, my family & our friends support, Ian & Max have got me to today. We will never give up fighting for Max.”
It has been over 3 years since my appointment as National Director and I have learnt so much about our community and the people our charity supports. That’s what we are here for. That’s what keeps me going when things are challenging, and do what needs to be done to make changes, for the team and for my family and myself. I am still really proud to be part of Action Duchenne’s journey.
Launch of Action Duchenne Annual International Conference 2023 – Celebrating 22 years of supporting the Duchenne community.
I am delighted to announce that the registration for the Action Duchenne 2023 Annual International Conference is now open! It will be held on Friday 10th and Saturday 11th November 2023 at Leonardo Hotel, Hinckley Island LE10 3JA and I want to personally extend the invitation to every member of our community.
The 2 day conference will bring together families, clinicians, therapists, researchers, and pharmaceutical companies from across the world. The theme for this year’s conference is ‘Educating, supporting, empowering’ focussing on key areas of Duchenne muscular dystrophy, enabling you to gain understanding, build your support network and take control.
The two day conference will consist of 3 content streams taking place simultaneously to cover all aspects of the Duchenne journey: Duchenne Science 101, The Duchenne Journey and Living with Duchenne. These include presentations, Q&A sessions, patient expert and clinical expert lead discussions and research updates.
Thanks to the support of our sponsors we are able to offer FREE tickets to Duchenne families as well as every young person and adult living with Duchenne. In recognition that many families in the Duchenne community are facing increased cost of living challenges we can also offer a £100 grant towards your conference accommodation (one grant per family), to help towards the cost of attending the International Conference. Register here for your FREE tickets: https://bit.ly/ADCONF23
Our conference is a place for our community to come together, to gain strength from each other and to feel understood and supported. It is a key part of our delivery as a charity, one which aims to provide our families with the knowledge they need and with hope for the future. I want to encourage you all to come along with your family – our Hang Out area for teens will have lots of activities for young people, and we welcome the return of our free creche for under 9’s to allow parents/carers to attend conference sessions. Everyone is welcome to join us on Friday evening for a Dinner Dance Celebration to make it an unforgettable weekend. The International Duchenne community is truly stronger together, and our conference embodies the sense of community for those living with Duchenne and their families, friends and caregivers.
Science on Tour
I was honoured to travel to Birmingham for our Science on Tour workshop. I really enjoy having the opportunity to meet the families, caregivers and clinicians who are a part of our community and to learn from them. Our science team does an amazing job in making the complex science behind Duchenne accessible to everyone, while providing updates on the latest research and the support for wherever families are on their journey.
I know that it can be hard to come along to these events if it’s something you haven’t done before, but the feedback we receive tells us that it helps people feel less alone and gives them hope to move forward.
“I think the information, the fact you are with other people in a likewise situation gives you valuable support and a feeling of not being alone. I was very anxious, held by the tears, about attending this meeting but came away feeling very much stronger.” Duchenne Grandparent, SOT 2023 Attendee
Counselling Support
As part of our continuing ambition to provide much-needed support for our families, Support Officer Kelly has developed a group counselling project. We know that many parents and caregivers have found it challenging to access the appropriate support to help them with the life changing impact of Duchenne. The programme will be delivered by accredited counsellors, will be free of charge and will cover topics such as anxiety, coping strategies and anticipatory grief. It will be an 8 week programme, held online, starting from September 2023 and will be a supportive and safe environment to share how you’re feeling and how your life and close relationships are impacted by Duchenne. We want to make this available to as many in our community as possible so please email kelly.molkenthin@actionduchenne.org if you’re interested and further information.
Dads Against Duchenne
We are continuing to develop and improve the support we offer, and last week saw the launch of our first virtual meet-up for Duchenne dads. Our Outreach officer Alex felt that often dads find it difficult to find the support and understanding they need, and our DAD’s night gives them just that. It’s an opportunity to get to know other people in a similar situation and have some time out of the demands of everyday life. Our DAD’s night will run on the first Monday of each month, from 8-9pm. Here’s the link to register:https://bit.ly/Dads.
Alongside this we will continue to set up more peer to peer support. We know that so many within our community have expertise, knowledge and empathy to share with each other – we truly are stronger together.
School Support update
We know that schools are an integral part of supporting families and young people who live with Duchenne, and we are focusing on developing our approach to working with them. We can offer staff training and support days, personal visits to schools and help and guidance with EHCP concerns. We can also provide training to SEN staff as well as classroom and assembly talks for students, and we can do this either virtually or in person.
Looking forward, we aim to create a network of schools who can support each other with our guidance. If you would like us to be involved with your child’s school and feel we could offer support or advice in any way, please get in touch with our Outreach Officer Alex: alex@actionduchenne.org
Spotlight on community fundraisers
I am always inspired and humbled by the amazing amount and variety of people who give up their time, energy and expertise to raise the profile of our charity.
The Summer is a brilliant time to fundraise – the sunshine, longer days and school holidays mean there’s much more scope to get creative and think outside the box! You don’t have to join an organised event – you can do your own thing and make it as big or small as you like. Organise a garden party, a picnic, set your own endurance challenge, have a stall at the Summer Fete or like our fundraising officer Victoria’ s children, run a lemonade stand!
Action Duchenne Charity Dinner Dance
In March 2023, Ruth Talyor, whose son Max lives with Duchenne, and her dedicated team of friends and family held a charity dinner dance to raise funds and awareness for Action Duchenne. The event was a huge success, with sold out tickets, a raffle, auction and live band. Since the event took place, Ruth has been working hard behind the scenes to maximise the amount raised through match funding, and Santander agreed to do this and match funded the entire amount raised. This is an amazing way to make the most of a fundraising opportunity, and means that the total amount raised for Action Duchenne is an incredible £54,528.58. This extraordinary amount of money, alongside the awareness that the event raised, will truly make a real impact and we are so grateful both to Ruth and her team and to Santander Foundation.
Runner Support session – Action Duchenne 2023 London Vitality 10000
We have so many amazing people taking on running events for us, and our fundraising team are here to support you in every way. As well as helping you with lots of ideas to get you to your fundraising goal, our Community Fundraising and Support Officer Victoria has started a monthly online runners support session, with training tips and advice. The next one will be held on Thursday 13th July and we’d love to see you there: Runners Support Session
As many of you know I am taking on my own running event for the first time – the London Vitality 10000 on Sunday 24th September. We still have places available for this brilliant event, with its iconic route taking in many London landmarks.
I would love to have as many people as possible running for Action Duchenne, to put Duchenne in the spotlight and to showcase the amazing community that we are. Join us as a team with your work mates, your football team-mates, your pub quiz team, your flat-mates or just with some friends who’d like to take on a challenge for a good cause.
Sign up for the Vitality London 10,000
If you’d like to support us as we continue with our much needed work please get in touch: victoria.young@actionduchenne.org.
As we come to the summer holidays and past the half way point of 2023, I continue to look to our community who power our work and lead us on our journey. I am excited about all we can achieve together in the coming months. I wish you all a lovely Summer break.
