In those three days I absorbed everything — both the science and the stories — especially from parent advocates whose children had received ASOs.

I learned:

• Central Nervous System ASOs require delivery via spinal tap every 3 months

• They typically take at least 24–36 months to build

• And even if accepted by an organization like N. Lorem, one of the hardest hurdles is simply finding clinicians willing and licensed to deliver them

What wasn’t yet clear was whether N. Lorem could build what GG needed — and within a month, their scientific review confirmed what my gut had already quietly prepared me for: they did not yet have the technology to pursue her gene.

That was a door closing — but it didn’t feel like an ending.

Where Instinct Meets Strategy

As soon as I understood that GG’s condition was due to haploinsufficiency — meaning she needs a way to boost the single working copy of her gene — I started reaching out to scientists doing similar work, even if N. Lorem was not yet.

This part felt familiar:
Years earlier, building Golden Road Brewing, I had gone across the country to convince a top innovation brewmaster to join me before we even had equipment or permits. I trusted that energy attracts momentum when you act boldly, intentionally, but not forcing alignment. In my early 20s, I read and reread Flow: The Study of Optimal Performance; where doing IS enjoying, where time stands still, and where alignment just starts showing up.  

With GG’s new (to us) diagnosis, I applied the same pattern:
Ask strategic questions.
Follow alignment.
Move quickly when the right people step forward.

My three guiding filters became:

1. What’s the discovery strategy?
   Which scientific path gives GG the best chance of restoring or compensating for her missing gene function?

2. Who has the expertise and tools to help — now?
   Not someday. Not abstractly. Now.

3. Where are we in the evolution of N=1 medicine — and how do we pursue it in a cost-aware, reality-based way? Does this path align with the FDA’s path (or lack of path) for IND submittal?
   The truth is: one child’s treatment can cost what a company spends on an entire clinical program.
   We needed to understand what was essential, what was avoidable, and how every dollar and decision mapped to probability and impact.

Intuition opened the door.
Strategy decided which rooms to walk into.

(Meg with Co-founder & first investor Tony Yanow and first Brewmaster, Jon Carpenter…Tony didn’t say “there’s no path.” Instead, he said, “Time to make a path.”

The First “Yes”

In those early weeks, I had several in-person meetings with Michelle Mattson-Hoss, phd. It wasn’t easy to sit across from her and keep the conversation strictly scientific when my heart knew what was at stake. But strangely, I felt the same flow/alignment with her as I did in my early relationships founding Golden Road.
It quickly became clear:
Michelle’s dual perspective — mother and deeply engaged rare disease researcher — made her an enthusiastic yes, and the clear choice to become our first scientific advisor.

Michelle has helped us understand quickly that while institutions likely will get involved in the journey (and we want them!), there are CROs in our backyard of San Diego that can do excellent research for NAA15 quickly. This has allowed our program to stay lean and nimble as we move the work down the proverbial football field.

(Michelle, GG’s first PI & Meg working through GG’s Purple Project Management Binder over lunch in Torrey Pines)

The Next Strategic Step — With Alignment

Through Michelle, one partner stood out next: La Jolla Labs, a biotechnology company focused on advancing RNA-targeting therapeutics and making precision treatments more accessible. They combine modern RNA biology with machine learning, automation, and high-throughput screening — an intersection I have always gravitated toward in business:
science + technology + velocity.

La Jolla Labs isn’t just another lab — they bridge target to lead compound, helping families and researchers avoid years of trial-and-error by getting clarity earlier in the process. Their tools don’t just generate data; they support decision-making — especially financial decision-making — which matters in N=1 when there may be no path visible path to commercialization.

And importantly: while NAA15 ASO is theoretically feasible, no one knows if a treatment will work — or which sequence might — until the screening and validation work is done.

So today, we’re thrilled to share that we’ve engaged La Jolla Labs to explore what’s possible for GG. Over the next 3–5 months, they will screen 80 candidate ASOs using their machine-learning-powered discovery tools — a front-loaded approach that lets us prioritize the most promising sequences before investing in deeper research and manufacturing.

In practical terms, this means that before we spend years and millions on development, we will have evidence:

• whether GG’s gene is realistically addressable,

• which ASO designs show promise,

• and how to allocate resources wisely.

This flips what I thought was the required order — research first, decisions later — into a model that feels more aligned with how my life has often unfolded:
start where the signal is strongest.

Building the Path That Doesn’t Exist

A path did not exist for GG.
But one is now forming — not by accident, but through instinct, data, collaboration and the willingness to invest wisely wherever alignment, scientific evidence- (thanks to Dr. Gholson Lyon’s lab…more on that later…), and probability converge.

And my hope is that sharing our journey – whether we succeed with a treatment for GG & NAA15 or not -  helps other parents see that with a combination of patience and persistence, there may be a scientific path forward for your child.

For parents navigating hopeless diagnoses no one is prepared to hear:
There are clues.
There are patterns in these mutations.
There are scientists and clinicians who say yes.
Follow them — and if required, build what’s missing.