Lighter Days and Warmer Months

Lighter Days and Warmer Months

As we head into Spring, it is wonderful to begin to see the longer lighter days, the flowers beginning to bloom and the chill of Winter starting to give way to warmth.  I can see the hope that Spring brings reflected through many aspects of our work. 

Science on Tour

We have completed our first month of Science on Tour 2023, delivering 7 workshops in 7 different locations. We’ve been excited that there has been a real mix of parents/carers at various points on their journey from recent diagnosis onwards as well as extended family, friends, school staff and clinicians joining us. Our small group setting means that you’ll feel comfortable and supported and able to ask any questions you might have.

“I really enjoyed the science on tour workshop I attended yesterday. I feel I understand the condition more with regards to the genetic side, treatment and day to day management. Everyone there was really friendly and I felt I could ask questions, nomatter how big or small. I left feeling like I was part of a community and have people I can turn to if I need help and support. Thank you.” Duchenne Parent, SOT 2023

I was able to personally attend the workshop in Oxford and as always it was a privilege to be a small part of such an important aspect of our work. Science on Tour isn’t just about communicating scientific knowledge. It is a practical example of the priorities of our charity. It enables us to be there in person alongside those who we support, to learn from their experiences and to be inspired by their journeys. 

Our Chief Scientific Officer Dr Mehreen Arif summed up her thoughts on the first month: 

“The first month on the road delivering the science on tour workshops has been absolutely brilliant. It was great to meet families, teaching assistants, clinicians and other stakeholders from the Duchenne community. The workshops have been very engaging and interactive, I have personally learnt and gained a lot of knowledge from the discussions that we had with families. It feels so good to empower the community with Duchenne science, to equip the audience with up to date knowledge about the current scientific developments so the families feel confident to ask questions and strive for the best care for their loved ones. I am so grateful to the Duchenne community for sharing their expertise with us and for being a part of these workshop so we could learn from each other, share knowledge and build support networks”

We have another 3 workshops to look forward to in April, along with many others coming up in the following months and our team would love to see you.

Book your FREE place for you, your friends and family and your care team here:

Yes I Can

Our transition programme returned for our next set of 12 online sessions on Wednesday 8th March. It was great to see some familiar faces and meet some new ones too. After a chat through the plans for our upcoming programme, Ravi Metha, Project Engagement & Support Coordinator led some ice breaker games to get the group chatting and starting to know each other. The second session was a real treat as we welcomed DJ and music producer Sanjeev Mann and Rock Band front man Alex James. As well as being amazing musicians, both Sanjeev and Alex live with Duchenne and were able to share the ups and downs of their experiences of accessing the music industry with a disability. Their achievements alongside their insight and empathy made for a really special session for our young people. 

The next online session will take place on Wednesday 5th April at 6pm and will focus on Wellbeing. Our new Support Officer Kelly Molkenthin will share some tools to optimise our mental health and Ravi will share some of his personal experiences too. I know from our feedback that many of our young people identify mental health, anxiety and isolation as being things that impact their lives and we are keen to support them to feel they are able to take charge of their wellbeing.  

The online sessions schedule is really exciting and includes joint sessions with Treloar College, The Pathfinders Neuromuscular Alliance as well as guest speakers and those sharing their invaluable lived experience. Sign up for our online sessions below, we would love you to join our growing network of young people. 

I am also very excited to announce that we are able to offer residential weekends as part of Yes I Can. These are amazing opportunities for our young people to take part in outdoor adventure activities alongside others living with Duchenne, all delivered in a completely accessible centre set in beautiful surroundings. This opportunity is open to anyone aged 16 – 25 who lives with Duchnne. You’ll need to bring a parent or carer with you, and you can bring a second carer if you’d like to. The weekend is completely free to participants, including all meals and activities. You just need to get yourselves there! 

There are currently 2 dates and locations available:

Calvert Trust Exmoor: 26th – 29th May 2023

Calvert Trust Lake District: 18th – 21st August 2023. 

These weekends are transformative for our young people and are a key part of our transition programme. If you’d like to register your interest, please email lizzie@actionduchenne.org to let us know which weekend you’d be interested in. 

Charity Dinner Dance

On Saturday 25th March, our wonderful supporters Ruth and Ian Taylor held a Charity Dinner Dance for Action Duchenne. The black tie event was held at Aston Villa Football Ground and had a live band, DJ and auction. I was honoured to talk to Ruth and Ian before their event and to hear about the difference that having support from Action Duchenne has made since their son Max’s diagnosis in January 2020. Ruth’s sister first reached out to us and our support team made contact with Ruth. After a few phone calls, Ruth felt able to take part in our peer-to peer support, through which families at similar stages are put in touch with each other when they feel ready. Meeting another family who understood what they were experiencing has been a lifeline for both Ruth and Ian, as have the other parents they met at our 2022 International Conference. In 2021, Ian ran a Tough Mudder which raised over £7000 for Action Duchenne and this spurred Ruth on to do her own fundraising. They both feel passionately about raising awareness of Duchenne, and having received support from Action Duchenne since their son Max’s diagnosis. They want to raise funds to ensure that this vital research and support can continue to be available to our community.  Four members of the Action Duchenne team were honoured to attend and we were humbled and inspired by the amount of hard work  Ruth and her Charity Dinner Dance Committee (Sally, Vicky, Deb and Sadie) put into producing such a beautiful event. As part of the evening, Ruth made an eloquent and heartfelt speech which did not leave a dry eye in the house and there was an overwhelming amount of support both for the family and for the charity.  I left the event feeling truly inspired by Ruth and Ian’s determination to turn their son’s devastating diagnosis into hope, action and positivity. 

This is echoed throughout our community fundraising news. Over the weekend we had 7 people running the London Landmarks Half Marathon, 1 person running the Brighton Marathon and 1 person running the Paris Marathon. At this moment in time they have all raised £5626.46 with more to come. Alice Hayes, our runner in the Paris marathon, is a teacher running on behalf of her year 4 pupil Sebastian. She has involved the whole school community in raising awareness and funds through a variety of activities including a bake sale, non-uniform day, table top sale and raffle. I love witnessing communities coming together to support our families and our vital work.

AGM

Our AGM was held over Zoom on the 22nd March 2023 and we welcomed staff, trustees and Action Duchenne members. On behalf of the staff and the board, I would like to thank all of our members for their ongoing support which allows us to continue our vital work. We took this opportunity to present our achievements this year and our plans for the year ahead. 

As we head into Spring, I am excited and full of hope for what we can achieve together.