Ten years.

In thirty-one days, on March 27th, we will mark a decade since we said goodbye to Tori.

For 3,652 days, I have lived in the “if onlys.”

If only we had known.

If only she had been screened at birth.

If only the system hadn’t been so blind to her needs.

In those early, hollow years, I wanted a monument. I thought that by passing a law with Tori’s name on it, I was ensuring the world would never forget the weight of what we lost. I thought a sign on the road was the only way to honor her twenty months of life.

But as the days turned into years—2,292 days, to be exact—at the Pennsylvania Capitol, my perspective shifted. I spent those days at the loom, studying the very systems that had failed us. I realized a difficult truth that changed the trajectory of my life:

Monuments are brittle. Fixing the pavement is what actually saves lives.

Decoding the Loom

I stopped fighting for a name and started focusing on the road. I moved from being a silhouette fighting alone in the dark to becoming an architect.

I began to see that the system wasn’t a monster; it was a weave. And if I could learn the language of the threads, I could re-engineer the future.

I discovered that resilience wasn’t about out-hustling the world, but about pacing the heart. I learned that humility was my greatest weapon, and that integrity was the only asset the gatekeepers couldn’t take from me.

The result of that “invisible” work became real last summer when I held the hands of two little boys who were saved by the very system we re-engineered. Even more amazing, they were born on Tori’s birthday, just sixty-seven days after Pennsylvania began screening for Krabbe disease.

That is the only monument I ever needed.

The Handover: A Brighter Blueprint

To honor this ten-year milestone, I am handing over the map.

On March 27th, I am releasing my new book: A Brighter Blueprint: The Twelve Threads of Effective Advocacy

You can preorder paperbacks and hardcovers directly through me!

eBook preorders

This isn’t a memoir of my grief (I already wrote one of those); it is a manual for your mission.

I have compiled every lesson and every technical thread I discovered during the last decade into a framework for anyone who is tired of screaming into the void and ready to start studying the loom.

Whatever you hope to change, this brighter blueprint will help you.

And because the work doesn’t end with a book, I am also opening The Brighter Blueprint Studio. Starting in Fall 2026, my team at Patient Advocacy Strategies will host masterclasses and webinars to teach parent advocates and industry professionals to speak the same language of impact.

The system took my control; the loom gave it back. Now, I am giving it to you.

Let’s get to work.