Dear International Duchenne Community,
Today, we take a moment from our daily lives to raise awareness about our community and share what it means to live with a rare syndrome or disease.
Over the last 12 months I have had the opportunity to work with a team of amazing health professionals and partner organisations to support young people, adults and their families who are directly affected by Duchenne muscular dystrophy. I have learned about their experience of what it took to get diagnosed, the journey after finding out and what lessons there are for others facing the challenges.
These conversations have solidified my plans to help families gain understanding of important information about the latest research. Helping Duchenne families make important decisions around clinical trials their child, young person or adults’ care will continue to be my absolute focus in the coming months, years and beyond.
Earlier this month, I had the opportunity to meet and listen to a young man who lives with Duchenne as I welcomed him onto our team as a Support Officer.
The most compelling part of our call is that he is filled with hope for the future. When I asked him, “what advice do you have for our young people and adults?”, this young man answered;
Remain hopeful and be open the fact that we don’t know everything about Duchenne. Listen to your consultant and your parents. Support others who are also going through the journey. I am here, I just wanted to help everyone I can, give as much as I can….
Reflecting on Rare Disease Day 2021 and my conversations with our Duchenne families has got me thinking – how can we collectively work together to support EVERYONE who lives with a rare syndrome or disease.
Please contact me directly if you would like to share your thoughts and help us work towards creating ‘a world where lives are no longer limited by Duchenne muscular dystrophy’.
I look forward to hearing from you.
With warm regards,
Florence Boulton
National Director, Action Duchenne
Happy birthday John Miller
