Continuing to come together

Continuing to come together

2023 has already brought meaningful victories as we rally science to our support. In January we heard that NICE has approved TRANSLARNA – a global first for publicly funded transformational treatment for Duchenne. 

Science on Tour

In the coming weeks we begin two of our much – needed projects. Science on Tour returns for 2023 on Tuesday 7th March in Reading. We are covering 95% of the UK’s postcodes with 30 workshops over the coming months and I know that our team are very much looking forward to welcoming you all. A lot of work has gone into developing new content for this year to include the role of dystrophin in the brain and in behaviour, current and emerging treatment options and clinical trials. Taking the science behind Duchenne into our community, offering support to those who need it and simply meeting families, friends and clinicians is a crucial part of our vision as a charity.

Our first session in Reading was wonderful and set the tone for the coming months. 

“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, not matter 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.”  Reading Science on Tour Attendee 

I can’t wait to see as many of you as possible at our workshops – follow the link below to book free places for you and your family. 

Yes I Can

After the success of our first programme in 2022, our second set of 12 online sessions began on Wednesday 8th March 2023 at 6pm. Our transition project is close to my heart and I am so pleased that we are able to offer this support to the young people in our community. This group of sessions will have a focus on mental health and wellbeing as well as accessible sports and travel. These sessions will also encourage young people to share their own skills and experiences and run their own sessions for each other as well as hearing from experts. They are informal and designed to make young people feel comfortable and understood, while also empowering them to realise their potential. I passionately believe that our young people have so much to offer our society in many different ways and I hope that taking part in Yes I Can will enable them to achieve this. We will also run residential weekends to the Calvert Trust, an accessible outdoor education centre specialising in providing adventurous activities for those living with disabilities. These weekends were a central part of the success of our transition project in 2022, providing an opportunity which was truly transformational for those who attended. 

Ravi, who heads up our transition project and lives with Duchenne himself, ran the first online session of 2023 and we were joined by some familiar faces from last year as well as some new ones too. It was a great session with a combination of chat and fun, a chance to get to know one another as well as discussing what’s coming up in the next few months. I am looking forward to seeing what this amazing group of young people can achieve. 

The online sessions are fortnightly on a Wednesday evening, are free to attend and open to anyone aged 14-25 living with Duchenne. Register using the link below:

Team Day with Roche

On 1st March, the whole Action Duchenne staff team along with Mark Silverman who represented the trustees were honoured to be invited to spend the day at Roche offices, sharing our combined hope for the future for those living with Duchenne, and to recognise the strategic alignment of our two organisations with our common desire to accelerate effective treatments to patients and to share best practice . The day allowed everyone to gain a greater understanding and insight into each other’s work, to look at the challenges and the achievements and to align our visions for the future. We are incredibly grateful to Richard Erwin, General Manager of Roche for hosting a wonderful day and for the support they give to Action Duchenne.

It also allowed the staff team to get together in person. We had time to meet together to discuss our thoughts for the future of Action Duchenne and share ideas for how we get there. It means so much to be able to be in the same room together, listening and learning from each other. We have a diverse team who each bring their own skills and strengths and continue to inspire me with their commitment to our vision.

Vitality 10K

Our community fundraising has taken off with renewed vigour 2023. Dawn and Victoria, our Community Fundraising & Support Officers, have been inundated with people taking part in events and signing up to fundraise for us. Our community fundraising is central to our charity and it is amazing to be able to personally engage with those who give up their time and energy to support us. Each event raises not just vital funds but awareness and understanding and enables us to reach more of our community. 

The 28th of February marked Rare Disease Day, a day in which we joined with the Genetic Alliance UK and many other rare disease charities to shine a light on the challenges faced by those living with rare conditions. Our own vision within Action Duchenne is echoed through the advocacy for equity in healthcare and social opportunities highlighted globally by Rare Disease Day. 

Lizzie Deeble, Project Assistant and Duchenne Parent, went into her son’s school on Rare Disease Day to talk to the children about Duchenne and the work our charity does. The engagement of both pupils and staff with their commitment to fundraising for us and their enthusiasm to understand has inspired our team to find new and innovative ways of engaging with our schools and communities. 

Not to be outdone, I have signed up along with over 30 others to run the Vitality London 10k event for Action Duchenne in May this year. I’m creating my fundraising page and starting to train.  I am so excited to put on my Action Duchenne T Shirt and join the team! If you’d like to join us, register your interest here:

Rare Disease Day

The 28th of February marked Rare Disease Day, a day in which we joined with the Genetic Alliance UK and many other rare disease charities to shine a light on the challenges faced by those living with rare conditions. Our own vision within Action Duchenne is echoed through the advocacy for equity in healthcare and social opportunities highlighted globally by Rare Disease Day. 

Lizzie Deeble, Action Duchenne Project Assistant and Duchenne Parent, went into her son’s school on Rare Disease Day to talk to the children about Duchenne and the work our charity does. The engagement of both pupils and staff with their commitment to fundraising for us and their enthusiasm to understand has inspired our team to find new and innovative ways of engaging with our schools and communities. 

Welcome to our newest team member

I would like to welcome Kelly Molkenthin to the Action Duchenne team in the role of Support Officer. Kelly joins us as a qualified Therapeutic Person Centred Counsellor and has worked as a family support worker and children’s support worker for a domestic abuse charity. Kelly, her husband Stuart and her 2 boys have also been long term supporters of Action Duchenne and I am very excited that she is joining our team. 

I look forward to updating you on the progress of our Science on Tour and Yes I Can projects in the coming months and hope that I will be able to meet as many of you in person as possible. Let’s continue to make 2023 the year of community and coming together.