09/27/2026
25 years ago, my life changed forever.
25 years ago, i was told i had fibrodysplasia ossificans progressiva.
yesterday, the third medication for FOP was approved by the FDA — and for the first time, there’s an approved treatment that i’ve been genuinely excited about trying.
the first approved treatment was the clinical trial i participated in years ago, and unfortunately, i experienced some pretty terrible side effects. the second drug was approved earlier this year, but it wasn’t one i felt interested in pursuing.
this third one? this is the one i’ve been waiting for.
and when i look at how far we’ve come, it’s kind of impossible not to get emotional.
four years after my diagnosis, in 2006, the FOP gene was discovered.
that discovery lit a fire within our community. we always had hope, but for the first time, we had science. we had something tangible. we had a place to start.
then, in 2016, the first FOP clinical trial began.
something we weren’t sure would happen in my lifetime — let alone while i was in my TWENTIES.
i remember being excited that it was finally happening, while simultaneously having absolutely no interest in participating myself. 😂 my parents, of course, had other ideas.
fast forward to 2026.
i completed my second clinical trial at the end of 2025. one of my trials has now led to an FDA-approved treatment. the other didn’t end the way we hoped.
but here we are.
25 years after my diagnosis, we are dreaming bigger than we ever have before.
we’re dreaming of treatments that stop FOP in its tracks.
we’re dreaming of surgeries that could someday give people their mobility back.
we’re dreaming of a cure.
and if not for us, then for the future FOPers who will hopefully never have to experience life the way we have.
my FOP diagnosis changed the course of my life.
but it never stopped me.
FOP has tried to stop me. sometimes, it even succeeded.
but it will NEVER EVER take away my dreams, my hope, or my power.
25 years later, we’re still here.
we’re still fighting.
we’re still dreaming.
and today, we celebrate.
because dammit, we can. ♿️🩷
