When Money Becomes the Point

What money can do, what it quietly reshapes, and what it cannot see

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I recently read a Vanity Fair article featuring Michael J. Fox and Harrison Ford, reflecting on Parkinson’s, friendship, public advocacy, and the experience of living with the disease. It’s a generous piece. Warm. Human. The kind of article that reminds us why people care. It reminds me of why I cared enough to change the trajectory of my life.

But woven into that story is a number that’s hard to ignore.

Over roughly twenty-five years, the Michael J. Fox Foundation has raised on the order of $2.5 billion in the name of curing Parkinson’s disease.

That is a staggering amount of money. It represents enormous goodwill, real generosity, and the sincere desire of millions of people to help.

It also invites a difficult question - not about motives, but about outcomes.

Because when you step back from the emotion and the storytelling, from the celebrity and the fundraising success, you’re left with a quieter reality that families living with Parkinson’s know intimately and live with every day:

We still do not have a cure. We do not understand the causes.
We do not have a therapy that reliably slows or halts progression.
We have not meaningfully changed the arc of the disease.

People are living longer with Parkinson’s, but that has more to do with supportive care than with altering the disease itself. Earlier diagnosis often means a longer period of managed decline, not a different destination.

So it’s reasonable to pause and ask: what has all that money actually done?

What money is very good at doing

Large amounts of funding are not meaningless. Far from it.

Money builds things. It creates infrastructure. It allows for global trial networks, standardized protocols, sophisticated measurement tools, databases, wearables, biomarkers, and regulatory pathways. It attracts talent, supports careers, and enables scale.

The Fox Foundation has done these things extremely well.

But over time, something subtle happens when funding reaches this magnitude. Money doesn’t just support research — it begins to control it.

Money accelerates the direction it’s pointed in and excludes everything else. A good example of this is the money that came from Sergey Brin poured into Parkinson’s research focused on a SINGLE GENE, the LRRK2 gene, and diverted other areas of focus for nearly a decade. It deepens existing assumptions and paradigms that haven’t been working. It rewards work that fits comfortably within the prevailing framework and can be reviewed, replicated, and justified by people already trained inside that framework. It gives money to the insiders, not the outliers.

What it does not do particularly well is question the frame itself.

The difference between activity and transformation

Within large research ecosystems, progress is often measured in ways that make sense internally: more studies, more trials, more biomarkers, more targets, more papers, more “pipelines.”

From the outside — from the perspective of patients and families — progress looks very different. It looks like a changed future. It looks like prevention, finding the causes. It looks like reversal, meaningful improvements in quality of life. It looks like not having to watch the same story unfold again and again.

I can’t tell you how many times a Parkinson’s patient has sent me a “headline” about finding the answer to Parkinson’s that I easily saw as a headline to generate more funding but not a solution.

And this is where the disconnect becomes painful.

We’ve become very good at studying Parkinson’s.
We’ve become very good at managing Parkinson’s.
We have not become very good at ending it. Because, let’s be honest, there really has been no monetary focus on ending it. Only lip service.

That gap isn’t explained by a lack of effort or compassion. It’s explained by a narrowing of vision.

When money quietly becomes the object

Here’s the part that’s uncomfortable to say out loud.

In chronic disease, real people are not only patients — they are also the market.

Parkinson’s is lifelong. Progressive. Expensive. It generates continuous engagement: prescriptions, appointments, devices, procedures, trials, adjunct therapies, and ongoing fundraising. A cured patient exits that system. A managed patient remains within it. The same is true for many other chronic disease so this manifesto could apply across many diseases - heart disease, diabetes, cancer, etc.

No one has to intentionally drive this outcome. Large systems respond to incentives whether or not anyone names them.

Over time, institutions can begin to orient around sustaining momentum — MONEY, awareness, advocacy, engagement, continuity — rather than dismantling the disease entirely. Fundraising success becomes conflated with scientific success. Motion starts to substitute for movement.

Again, this is not an accusation. It’s an observation about how systems behave.

A parallel timeline

This is where my story fits in a careful, alternative timeline of the same 25 years. I’ve repeatedly told the story of how my journey started the year Michael J. Fox published his first book and my 44-year-old husband was diagnosed with Parkinson’s.

Over roughly the same twenty-five years that billions of dollars have flowed through the Parkinson’s foundation ecosystem, I’ve been working largely outside it. I haven’t had celebrity backing. I haven’t had institutional protection. I certainly haven’t had anything close to that level of funding. In fact, at one point I tried to compete with them for funding my ideas and fell flat against the “big named players”.

Perhaps that was actually a gift. What I have had is the freedom to look where others weren’t encouraged to look.

My work has focused on Parkinson’s as a systems disease — one rooted in our environmental exposures, our food, gut biology, immune signaling, barrier integrity, bile acids, microbial ecology, surfactant burden, and the physics of the glycocalyx. Not as a late-stage brain disorder alone, but as a terrain problem that unfolds over years, often decades, before the first tremor appears. A timeline that presents many points of intervention.

This line of thinking has not been easy to fund, because it doesn’t slot neatly into pharmaceutical endpoints or single-target interventions. It challenges assumptions that entire careers and institutions have been built on. And so, I took our life’s savings, everything I made in a very successful real estate career and began to search for the answers myself. A lone wolf in a sea of dogma.

But here’s the honest comparison I keep returning to:

With very little money, systems-level work has yielded more explanatory coherence — and more practical leverage — than decades of well-funded optimization inside the narrow existing framework.

That’s not a claim of superiority. It’s a reflection on what becomes possible when inquiry isn’t constrained by the need to protect an existing structure. When all you want is to STOP the disease and money doesn’t matter. When you are willing to give up every dollar you have to find the answer.

Why scale makes seeing harder, not easier

As funding grows, so does gravity.

Review boards are composed of experts trained in the dominant model. Grant mechanisms reward alignment and predictability. Careers depend on continuity. Institutions depend on stability.

At that scale, research systems become very good at refining what they already believe, and very resistant to questions that might destabilize the foundation itself or shake their funding pipelines.

Money, at that point, is no longer just supporting discovery. It is quietly preserving a worldview. A worldview that isn’t serving us.

Why this moment matters

The Vanity Fair article matters because it shows us the humanity — the courage, the dignity, the relationships that form around illness. Those stories are real, and they deserve respect. My life has been filled with similar low profile stories of patients and researchers willing to step outside the paradigms and listen to my ideas to connect new ideas.

But the same people featured so beautifully in those narratives deserve more than polished awareness campaigns and ever-better management of decline. They deserve a clear path to real answers to WHY and HOW did this happen to me and how do I stop it from happening to anyone else.

They deserve a science willing to ask whether we’ve been looking in the wrong place.

Because if Parkinson’s is a systems disease, one that begins long before the brain shows symptoms. We have to stop looking under the lamppost.

A closing thought

Money is a powerful tool.
But it isn’t wisdom.
And it isn’t vision.

Money can amplify what we already believe. That can distract us from seeing what the truth is. It cannot, on its own, teach us how to see. We must learn to see by looking beyond the existing paradigms.

And if $2.5 billion hasn’t changed the outcome for real people living with Parkinson’s, then the most honest question isn’t whether we need more funding.

It’s whether we are willing to look differently.

Because my entire twenty-five-year journey has been about learning to SEE. And what I SEE leads to real answers that can provide real solutions and a new paradigm in biology that can help far beyond Parkinson’s.

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