DON'T LET
THEM FALL
More young men are living into adulthood and reaching milestones once thought out of reach: graduating university, getting jobs, and actively participating in their communities.
Reaching adulthood brings a new challenge: the transition from pediatric to adult care at one of the most complex times in their lives.
What happens when these young men grow up? Will you be there to catch them before they fall?
Your gift can support our work to expand care and support for young adults with Duchenne, equip families with the knowledge and resources they need to navigate adult care, connect the people and services involved in their care, and advocate for access to medicine and clinical trials so that future generations don’t face the same gaps.
Meet Tory Provenzano
“I wish we would have known how difficult it was to find specialists, besides a neuromuscular doctor, that have an understanding of rare diseases like Duchenne.”
In pediatric care, Tory had one neuromuscular clinic who managed all his care: one coordinated plan, one team who knew his whole story. At 18, he aged out of pediatric care and that all changed.
When I moved out to the adult clinic, I had a neuromuscular doctor, a respirologist, a cardiologist, and two endocrinologists. There is less communication between doctors when it comes to coordinating appointment dates or treatments.
Meet Dr. Charles Kassardjian
“Just because someone turns eighteen doesn’t mean anything changes biologically for them. We use this kind of arbitrary eighteen-year cutoff to go from pediatrics to adult care, but nothing really changes for that individual. Unfortunately, a lot changes in the system.”
There are now more people living with Duchenne in Canada over the age of eighteen than there are children with the diagnosis.
Defeat Duchenne Canada is working alongside neuromuscular specialists, hospitals, and families across the country to build a coordinated transition into adult care. And your gift can support our work to expand care and support for young adults with Duchenne, equip families with the knowledge and resources they need to navigate complex care, connect the people and services involved in their care, and advocate for access to medicines and clinical trials so that future generations don’t face the same gaps.
For too many young adults with Duchenne, the smooth paved road ends at 18, but their journey is just beginning. Your gift can help us catch them before they fall.
We know that none of this happens overnight. And we thank you for the years you have already given these young men, and for helping us make sure the road keeps going.
You can make sure no one faces Duchenne alone.
Together, we can defeat Duchenne. With your support, we will.