Muscular Dystrophy Warrior

Economic growth is on the line. If you won’t change the treatment approval timeline for #raredisease children like my son, please do it even for selfish reasons. @realDonaldTrump @SecKennedy @FDACBER New report shows that trimming @US_FDA reviews by one year would not only accelerate patient access to new treatments BUT generate trillions in economic value.

In a quiet moment, I caught my son Ryu watching his cousins swim and dive in the pool. This is Duchenne as a teenager. 🔹It looks like sports games you watch instead of play. 🔹Swimming at the pool with Dad’s help instead of diving in. 🔹Racing your sisters around the block in a power wheelchair instead of your sneakers. I would do anything to preserve Ryu’s muscles. The truth is that it's more than missing out. Muscle loss extends to the heart. And we know what it costs… We need the @US_FDA to see the cost. To pay attention and pass treatments that can slow that muscle loss.

I enjoyed this beautiful interview with Alfonso @MDW826 alongside my husband, Tony. I share my journey with Duchenne muscular dystrophy, learning from my two brothers Antonio and Angelo, caring for my son Ryu, and going to Washington, D.C. to advocate for #Duchenne families like mine. Watch the full interview: youtube.com/watch?v=EeEp7wkI…