In the lead-up to Rare Disease Day, we were thinking about the strong and positive people who don’t let their disease define them. And so, this week’s blog is inspired by boys and young men with Duchenne muscular dystrophy who are defying the odds and realising their dreams and ambitions.
We spoke with PTC Therapeutics who launched a campaign called #DuchenneCan – dedicated to celebrating the strides and accomplishments of the people in the Duchenne community.
Since the campaign’s launch in early 2021, twenty (20) remarkable stories have been shared, which have rallied the community and generated positive momentum.
“#DuchenneCan was created to help raise the voices of the Duchenne community and shine a spotlight on the positive experiences of those living with the condition. We are determined to continue to create better prospects for people with Duchenne and their families in the future.” – Nermina Weber, PTC Therapeutics
Duchenne muscular dystrophy (also known as Duchenne or DMD) is one of the most common types of muscular dystrophy in children, mainly effecting boys. The outlook for those living with Duchenne muscular dystrophy (Duchenne) has improved in recent decades due to developments in diagnosis, care and treatment. This means boys diagnosed with Duchenne are now living longer and planning exciting futures with their loved ones.
Since January 2021, #DuchenneCan has brought together 20 stories of people from all around the world who make up and support the global Duchenne community, and this number continues to grow every month. PTC Therapeutics have worked with the Duchenne community for nearly 25 years and felt compelled to share these inspiring stories with the world. It is their hope that by sharing these stories, individuals and families facing a Duchenne diagnosis will feel empowered to live life to the full and find comfort in the community!
Read some of the #DuchenneCAN stories below. Many more can be found at www.DuchenneCan.co.uk, including those of parents and caregivers, support groups, physicians as well as PTC employees who are working hard to ensure that those living with Duchenne CAN live their lives to the full.
Meet Benni (30yr) from Germany. A young man living with Duchenne who travelled to Indonesia and Borneo to work on orangutan conservation and has since written two children’s books and become a public speaker on the topic.
Meet Guðjón (30yr) from Iceland, a geneticist who has used his research to contribute to our knowledge of Duchenne.
Meet Björn (32yr) from Sweden, who is passionate about improving accessibility both in his local town and in video gaming.
Meet Abdulla (37yr), from the UAE, who has two graduate degrees and founded the charitable organization, Yes2MyGiving.
PTC Therapeutics plans to continue to share #DuchenneCAN stories throughout 2022 and build on the positive momentum. Whether you are a member of the Duchenne community or not, you are invited to join the campaign and help share the inspiration!
- Visit www.DuchenneCan.co.uk to read the stories
- Look for the #DuchenneCan (hashtag) on social media
- Share a story
If you are keen to share your #DuchenneCan story, or know of a remarkable person living with Duchenne, or someone who is helping to make a difference to the Duchenne community, you can reach out to PTC Therapeutics to share your story at email@example.com .
National Institute of Health. What are the types of muscular dystrophy? Available at:
https://www.nichd.nih.gov/health/topics/musculardys/conditioninfo/types [Accessed February 2022].
Van Ruiten H, et al. EMJ. 2017;2(1):90-99.
This blog was developed in collaboration with PTC Therapeutics.
ATA/DMD/UK/22/0007 | Date of preparation: February 2022