Supporting families with science

Supporting families with science

It’s already been 8 months since I joined Action Duchenne as a Science Communications Coordinator – a journey filled with new experiences and incredible encounters. Time flies, but it has made me realise the impact that a dedicated team can achieve toward a greater goal. Each person is an essential puzzle piece that contributes to a bigger picture, ultimately improving the entire landscape of people’s lives.

My puzzle piece is science. Science has been a constant presence in my life since my student days. I always enjoyed coming up with creative solutions for problems and had a passion for bridging the gap between complex scientific concepts and those who require the results.

Since joining Action Duchenne, I’ve come to understand that my scientific knowledge can propel us to a new level, enabling us to assist others. My mission here is to empower Duchenne families with science knowledge and, alongside other brilliant people in Action Duchenne, strive for higher standards of care for their loved ones. As a dedicated Science Communications Officer, my goal is to foster understanding and empowerment within the Duchenne community. We’ve embarked on a transformative scientific journey through two major projects: Science on Tour and Science Live Videos.

To date, we’ve visited over 20 locations across the United Kingdom and Ireland where we’ve conducted Science on Tour workshops. Each workshop provides a “360 degree” knowledge about Duchenne science in bite-size pieces.

It’s an indescribable feeling when families leave, expressing how much they’ve learned. These workshops go beyond science and knowledge; they provide a platform for sharing experiences and challenges. We’ve encountered families who were previously unaware of the life-threatening condition known as adrenal gland crisis and how to prevent it. Some families were hesitant about the benefits of steroid hormones on muscle function. Therefore, we elaborated on the latest research providing evidence-based facts and latest developments in medical science. Additionally, we’ve assisted families in discovering emerging therapies, treatments, and guiding them to relevant clinical trials. Our recently added topic on Dystrophin and the Brain has sparked insightful discussions.

Science Live Videos don’t require attendees to come to workshops. Their purpose is to bring science directly to people’s homes, offering the comfort of learning in their own space. By making scientific information accessible and understandable, we equip individuals with the knowledge they need to make informed decisions, navigate challenges, and explore potential avenues for improved care and management.

Both Science on Tour workshops and Science Live Videos break down barriers associated with science and evidence-based information. They underscore the fact that knowledge is indeed a powerful tool capable of enhancing the quality of life for these families. Through my work, I witness how science serves as a beacon of hope, illuminating the path toward a better quality of life and inspiring Duchenne families to embrace newfound strength and resilience.

Do you want to know more?

• To find out more about Duchenne science, gain crucial knowledge and support, there’s still time to join us on our Science on Tour workshops. Book your FREE place here now. 
• The Annual Action Duchenne International Conference 2023 will be held on the 10th and 11th November and is an amazing opportunity to meet with those involved in every aspect of Duchenne, from families, clinicians, researchers and pharmaceutical companies. Tickets are FREE for Duchenne families as well as everyone living with Duchenne AND there is a £100 grant available for Duchenne families towards travel and accommodation. Book your place now.