For the third year in a row, the global Duchenne community will come together on September 7 for World Duchenne Awareness Day. This day, this simple idea, has blossomed into a truly incredible opportunity for families and friends affected by Duchenne to tell their neighbor, or co-worker, or Facebook friend about this disease. This is our opportunity to not only raise awareness but inspire people to join our fight to end Duchenne.
This year a theme was chosen for World Duchenne Awareness Day that is not only critical to changing the diagnostic odyssey for people with Duchenne…it is a theme that the PPMD team believes strongly in: the importance of early diagnosis.
For 22 years now, a cornerstone of PPMD’s mission has been education and awareness. In order for children with Duchenne to be diagnosed at an early age, we must educate physicians, clinicians, care providers, even teachers and day care staff, about Duchenne. We must provide all primary care givers, in whatever capacity, with the tools they need to make an early diagnosis, so that families can begin to put together a team of professionals that can begin the therapies and care regimes we know help improve and extend the quality of life for people with Duchenne.
Over the next few days leading up to World Duchenne Awareness Day, you will hear from PPMD team members about the ways we have changed the landscape in an effort to promote early diagnosis. Whether we’re convening top neurologists and KOLs, ensuring quality care at interdisciplinary clinics nationally (not just our Certified Duchenne Care Centers, but all clinics with expertise), leading newborn screening efforts, or advocating for policies in Washington that reflect the concerns of our community, the critical importance of early diagnosis in Duchenne has never been lost on PPMD.
When my sons were diagnosed 32 years ago, they were 4 and 6 years old. Today, some children are diagnosed at even later ages. But a growing number of children are being diagnosed as early as 1 or 2 years old. And while the argument can be made – and has been – that ignorance is bliss, the truth is that early diagnosis means early intervention and potentially a better quality of life.
Every single story we tell, has the potential to change the life of someone just beginning their Duchenne journey.