Wow! What an amazing 3 weeks it has been at the Duchenne Science on Tour 2022. We are officially ‘on the road’, travelling the country to visit the Duchenne community.
We are on a mission to connect you to each other, arm you with the scientific ‘how’ and ‘why’ to ask the important questions and make key decisions that directly impact your loved ones.
Following a busy, but inspiring three weeks on tour, I wanted to take a moment to put my experience of visiting the resilient and incredible Duchenne community down on ‘paper’ to share with you.
From the first 6 of our 24 workshop locations, I feel fortunate to have met the parents, the
healthcare professionals, teaching assistants, nurses and family members of children, young people and adults living with Duchenne.
Each workshop is unique
It is the community’s positive outlook and experience that we learn from every day. You are truly the experts and I want to personally thank each of you for attending the workshops and sharing your insights with us and each other. As we tour the UK, we tailor each of the workshops meet the needs of the audience; no two workshops are the same. The sessions have been filled with laughter, a few tears and
many shared silences which carried a multitude of emotions and mutual understanding.
The team and I are extremely motivated to see the positive impact the workshops and our support
is already making on the attendees’ lives. The feeling I get at the end of a workshop, knowing that I have made a difference in someone’s quality of life humbles and encourages me to travel far and wide to reach
the community.
A safe environment
I was so pleased to hear that some of the participants felt this is the first time they have ever had the science behind Duchenne explained to them in such an engaging and understandable way. You have also told me that you were at ease to raise your concerns in the safe, supportive environment that we created.
One of the most important things the workshops have done is to help me identify the gaps that exist for the Duchenne community. My aim now, following the Science on Tour 2022, is to connect the right people to address those gaps and overcome them.
I look forward to seeing more of the community in the upcoming workshops so we can both learn from each other and strive to make a positive difference in the lives of people living with Duchenne.
My Dad is..
