A Bigger Horizon

Today, on my birthday, I had the opportunity to meet with the research team at Baylor to discuss updates on Logan and Iris's SPTAN1 program. There was no big announcement about the progress, other than we are in a good place and moving forward. However, I left feeling something I haven't felt in a while.

Possibility.

For so long, the conversation has centered around waiting. Waiting for research. Waiting for answers. Waiting for timelines that seem to stretch farther every time they're discussed. But, the ASO program for the girls continues to move forward. Slowly, steadily, and with all the challenges that come with developing individualized treatments for rare diseases. The work continues, and for that, I am deeply grateful.

But today introduced something else....What if there are more paths than one?

The Baylor team shared several organizations exploring drug repurposing for rare diseases. In simple terms, these groups use advanced genetic data, patient-derived models, and computational tools to search for existing medications that might help address the underlying biology of a disorder.

No promises. No guarantees. Just another door.

And after years of learning that progress in the rare disease world often comes from opening every door available, that felt meaningful.

The future of Hope for SPTAN1

What began as a website built out of necessity has slowly become a place where families find one another, share information, and realize they are not alone. The possibility of growing that effort into something larger, something that could help support research and future treatments, is both exciting and a little overwhelming. But maybe that's how all meaningful things begin.

One conversation. One connection. One small step forward.

As I reflect on another year around the sun, I'm reminded that hope rarely arrives all at once. More often, it arrives quietly. It looks like a researcher making a phone call. A scientist sharing data. A family reaching out. A new idea appearing where there used to be none.

Today didn't provide answers. But it did provide a bigger horizon. And for now, that's a pretty good birthday gift.