Blog by Florence Boulton, National Director
Last week I had the opportunity to join our first session in the ‘Yes I can’ transition to adulthood project. Having worked closely with other partner organisations in formulating this much-needed project; leading the team to create the programme and putting in place the tools to enable the team to deliver the project, I knew how much time and effort everyone here had put in to get this off the ground. And the session certainly did not disappoint!
Ravi Mehta, our Project Engagement & Support Coordinator hosted beautifully; making each and every young person and adult present feel welcome and listened to. He had chosen his keynote speakers well, welcoming Sanjeev, Alex James and Joshua to share their stories and experiences as adults living with Duchenne, all pursuing their ambitions and living their best lives.
When some of the young people felt confident enough to start to speak and share their own stories, the group listened and supported each other. We could see the group already starting to build those all-important relationships we will foster and nurture in this project.
Online and residential workshops
Over the next few months, Ravi and the team will be hosting 11 online expert, and peer-led workshops, covering important topics which have been crafted to give young people living with Duchenne the skills they need to fulfil their potential. The free online workshops are open to 14-25 year olds living with Duchenne muscular dystrophy.
There is also the choice of two weekend residential sessions taking place at the incredible Calvert Trust, in Exmoor, which are open to all 16-25 year olds. The activity centre is fully accessible, with highly experienced instructors and a range of activities; such as canoeing, zip wire, abseil and archery, enabling all participants to experience exciting, challenging and enjoyable activities, regardless of age or ability. We’re covering all the costs of the residential weekend, which includes all the fantastic activities, accommodation and meals, you just need to get there and bring your PAs.
We understand that it might be daunting to think about going on a residential trip, especially following the past couple of years. That is why we are here to talk you through the process and what to expect. Please feel free to contact Ravi via info@actionduchenne at any time, or join us on any of the online workshops and we’ll be happy to explain more about the residential weekends.
The residential sessions will be truly a fantastic experience for everyone, and we want as many people from the Duchenne community to take part as possible. Please don’t hold back, get involved and make the most of this opportunity.
Power to the next generation
I am so proud to be a part of Action Duchenne, at a time when we are able to provide such important support to the next generation of young people living with Duchenne. If you look more closely at the picture below, you may spot a familiar face taking part in the abseil at the Calvert Trust. This is Dr Jon Hastie, one of the original pioneers who has supported hundreds of young people and adults living with Duchenne. It is important for me to acknowledge Jon’s ground-breaking work, in particular since he announced he is moving on from his position at The Neuromuscular Pathfinders Alliance.
Jon, I wish to personally thank you for working so closely with us over the past years, and to wish you the very best of success, happiness and continued health for the future. You are a shining beacon of light for everyone in the Duchenne community, and you have had a profound impact on countless people through your work on inclusion, diversity and living your very best life. I will miss working with you in your role at The Neuromuscular Pathfinders Alliance, but look forward to what the next chapter will bring.
Supporting parents through diagnosis and helping families make informed decisions
This month has also seen our Science Education Programme taking flight. It was my absolute pleasure to join Alex Berbank our Outreach Officer and Dr Mehreen Arif our Chief Scientific Officer at the first of 24 Science on Tour workshops which took place in Cambridge.
Since that wonderful day, the dynamic duo have travelled to seven other locations and shared their knowledge and expertise with a glorious mixture of Duchenne parents, carers, families, educational and healthcare professionals, clinicians, supporters and students! We have received glowing reviews from the attendees;
- 100% found the workshop extremely useful
- 100% felt the session was the right pace for them
- 100% rated the session ‘superb’
And the most encouraging feedback;
“Lovely to have a mixed group of experience and perspectives in the workshop. The knowledge was pitched at the right level for all with lots of interactivity and opportunities for discussion and questions.” – Healthcare professional
“The presenter made a difficult subject easier to understand and entertaining.” – Duchenne parent
“We found the session really useful. It was really flexible, we felt able to ask questions that were important to us and the session was adapted to meet the needs of parents in the room.” – Duchenne parent
“The event went absolutely great; it was a very informative session. Mehreen and Alex were fantastic hosts with great knowledge that were able to share and easily engaged the participants in learning activities.” – Duchenne parent
Although many of the next locations are booking up quickly, there are still places for Duchenne families and your teams around you to attend a session near you. The content is fascinating, and there is truly something for everyone, regardless of the length of time you have been in the Duchenne community. Please take a look at the venues and dates using the link below, and book your places to avoid disappointment.
What’s next for the team
As well as hosting the Science on Tour, Alex has been busy building solid foundations for our partnerships with clinics across the UK. Our aim is to gain an understanding of the diagnosis pathway for Duchenne and to help provide additional on-the-ground support to families upon diagnosis.
Our Support Team continues to provide our world-class and much-needed psychological support to over 2,000 Duchenne families per year on a 1-2-1 basis. We are also developing platforms for peer-to-peer support groups, which bring together individuals and families in a similar situation; supporting people to help each other.
2022 International Conference
Imagine walking into a room where every, single, last person completely understands and ‘gets it’.
We all want to feel like we belong and the Action Duchenne International Conference embodies a sense of community for those living with Duchenne and their families, friends or caregivers.
‘Educating, enabling and including’ is the theme for this, our 20th International Conference, which takes place IN-PERSON for the first time since 2019 on 11 & 12 November 2022.
The Action Duchenne International Conference embodies the lifeline of support we have provided for the Duchenne community and after all this time we are proud to give everyone the opportunity to share experiences, knowledge and power at this unmissable event.
Join us, and hundreds of Duchenne experts from around the world at the Jury’s Inn, Hinckley Island – we hope you can make it!
Advocating with families at school
Following the past couple of years of online appointments and telephone consultations, it feels like the families we are supporting are ‘back to normal’ with the quantity and location of their numerous appointments. Not only are Duchenne families returning to face-to-face appointments with their Consultants, Physiotherapists, Occupational Therapists and other specialists, but the number of families needing help at school has noticeably increased. Our Support Team has been extra busy this month, helping Duchenne families navigate support at school and how to help their child or young person achieve their full potential.
Advocating at school is an important and bold step for parents and carers, often stepping into the world of ‘Special Educational Needs’ that they may have very little prior knowledge or understanding of. Helping schools and settings understand the best way to provide additional support for children and young people living with Duchenne is important to enable their voice to be heard and to meet (and exceed) their needs.
We have built and will continue to build resources for parents, carers and schools, to help underpin parents’ existing knowledge to support their child to meet milestones and encourage schools to be more proactive and child-centred.
This week, we published the ‘Inclusive PE lessons’ resource, which is free and available to all. This has already seen hundreds of unique page views, and is the tip of the iceberg. We will continue to offer support and knowledge to Duchenne families to help parents and carers understand more about the process, being better equipped to help advocate at their setting.
Inspired to get involved
We’d love to have your support, to help us continue our high-priority work. The bottom line is that, alongside the support we receive from funders, we still need income from our traditional fundraising activities (regular and one-off donors, community and challenge events, corporate partnerships and legacy donations). We are proud to spend 88.7p in every £1 of income on our meaningful charitable activities (research, support, campaigning) and manage our activities closely to make sure we spend your donations wisely. With this in mind, I call on you to help us this summer by choosing one of these options below;
- Make a donation today – here
- Set up a regular donation – here
- Take part in the Swim Serpentine (we have 2 places in ‘one mile’ and 2 places in ‘two mile’). Registration fee is £40, with a fundraising pledge of £150 – here
- Take our last remaining place in the Royal Parks Half Marathon. Registration fee is £40, with a fundraising pledge of £350 – here
Wishing you a wonderful few weeks, and I’m looking forward to sharing my experiences on the road at our Science Education Programme ‘Science on Tour’ this summer!
Florence
Register for ‘Yes I can’ online and residential
