I Wrote a Book.
Actually, I have now written two—a fact that still surprises me daily.
If you had told me twelve years ago that I would be an author, I might not have believed you. But had you also told me I’d lose a child before harnessing my passion for writing, I also wouldn’t have believed you.
March 27th marks ten years since Tori passed away from Krabbe disease at just twenty months of age. Ten is a significant milestone, and I wanted to mark it in a way that honors her and all she taught us.
So, I wrote A Brighter Blueprint: The Twelve Threads of Effective Advocacy to share with you the lessons I have learned and the concepts I have researched that have made me who I am today—not just as an advocate, but as a person.
I didn’t write this book because I won.
I wrote it because I spent 2,292 days
learning how to stop losing.
What’s Inside the Book
When I set out to write A Brighter Blueprint, I knew I didn’t want it to be just another black-and-white business book. I wanted you to see what I saw.
That’s why the book is in full color, featuring photos I’ve taken around the world to accompany the stories I share. From the sands of the Sahara to the marble halls of the Capitol, these images are the heartbeat of the Twelve Threads.
Each version includes access to a Digital Resource Toolkit to help you build the legacy you are beginning to weave.
Introducing: The Brighter Blueprint Studio
At Patient Advocacy Strategies (PAS), we bring decades of experience on the industry side of patient advocacy. But we also bring decades of experience in rare disease advocacy. Our team consists of rare disease patients, parents, and experts who are ready to help you navigate the complex world of advocacy.
This has led us to develop The Brighter Blueprint Studio, a space where the art of advocacy can be explored and wisdom shared by those who have earned the experience. We believe that effective advocacy is both an art and a science, and the book and the studio explore that idea in depth through a two-phase launch:
- The Manual (March 27): We release the book. This is the manual for the work—a 3,652-day case study on moving from “If only” to “Never again.”
- The Training Ground (Fall 2026): We open the doors to The Brighter Blueprint Studio. This will be the space where we move past the megaphone and into the mechanics of the loom. In addition to our Twelve Threads masterclasses, the Studio will host specialized webinars focusing on specific systemic barriers and implementation strategies.
The Architecture of Change
The most world-shifting realization any advocate can have is this:
The system isn’t broken; it was often intentionally designed this way.
And if it was designed that way, it can be redesigned.
Administrative delays and barriers to access are rarely accidents; they are specification errors. When we view these burdens as “bad luck,” we remain victims. But when we view them as design flaws, we become architects. The Studio is where we teach you to read the system’s blueprints so you can re-engineer them.
The Master Weaver’s Framework
The Twelve Threads framework is the Studio’s core curriculum. It moves the advocate—professional or individual—through the technical requirements of high-stakes change:
- The Pothole Principle: Learning to build credibility by fixing mechanical gaps in implementation before chasing skyscraper-sized wins.
- The Scientific Method of Advocacy: Treating every “No” as data rather than defeat.
- The Side-Door Strategy: Finding the regulatory and administrative paths to permanent, life-saving outcomes when the front door is blocked.
Whether you are working at the bedside or in industry, it is time to stop fighting the machine and start studying the weave. Let’s pick up the shuttle and get to work.
Explore the Twelve Threads, preorder A Brighter Blueprint, and join the Studio waitlist at brighterblueprint.patientadvocacystrategies.com
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