This morning, I opened an email I wish had said something different. The subject line read: “FDA issues Complete Response Letter for Biohaven’s VYGLXIA (troriluzole).” Read Here
In short, it wasn’t approved.
For most people, that headline might scroll by unnoticed. But for those of us living with Ataxia, or part of the early access program, it felt heavier. For a while, this drug had carried something rare: hope that maybe, finally, we were on the edge of some form of treatment. Just something….some starting point!
When I joined the program, I wrote an honest update about what it meant to be part of something that could change the story for people like me. I tried to stay balanced—hopeful, but realistic. I knew this was science, and that science still takes time. Reading the news today is frustrating.
It’s not that the drug failed. It’s that the process did. The FDA said the data wasn’t strong enough—too dependent on “real-world evidence,” not enough traditional control studies. Biohaven’s research suggested a slower progression of the disease, but the agency wasn’t convinced the results could stand on their own.
That’s the part that stings. Because we’re not talking about a new skin cream or vitamin—we’re talking about people waiting, balancing, trying to keep their footing in every sense of the word.
What This Means Right Now
It’s okay to be disappointed. I am.
There’s this quiet kind of exhaustion that comes from getting your hopes up and then being told “not yet.” But I also know what’s helped me before—movement, community, perspective.
I’ll keep following the research. I’ll keep doing what I can control: therapy, staying active, staying connected, and continuing to share what living with Ataxia really looks like.
Because that’s the real story here, we move forward whether the approval comes or not.
For the Ataxia and SCA Community
If you’re feeling this one, you’re not alone. The trial may have paused, but the movement hasn’t.
Every time we share what’s happening—whether it’s frustration, small victories, or daily life—we make this condition harder to ignore.
This is how awareness grows: quietly, steadily, from the ground up.
Moving Forward Together
Hope doesn’t disappear when the outcome shifts. It just changes shape.
For me, that means staying steady, even when the ground feels uncertain.
If you’ve been following along on my blog, thank you for walking this with me. If you’re new here, you can join the community for future reflections and honest updates, or explore the InspireThread shop—where each design carries a piece of this story forward.
Because hope doesn’t end here – it just keeps finding new ways to move.
