Rare mom.Builder.
I’m building the companies, treatments and products rare patients need, with them, not for them, so we can take the best care of our kids and find their cures.
As featured in & speaking at
Citizen Health and FOXG1 Research: Building them together.
Citizen Health
The platform rare families actually need.
A consumer app built with 8,000 rare patients to handle the work that drowns us, the records, the appointments, the benefits, the medical secretary load that falls on parents. Built so we can be parents, not case managers, and so we can choose to share what we track, on our terms, to fuel the research that finds cures.
citizen.health →
FOXG1 Research Foundation.
Parents who created a gene therapy.
A parent-led foundation that took FOXG1 syndrome from no treatment to a gene therapy in clinical trials using data shared by families on Citizen. Proof that when rare families have the right tools, treatments happen. What I built for rare families, I built for mine.
foxg1research.org →A new kind of advocate
Meet Ari, by Citizen Health.
Our most ambitious product: we’re creating the teammate every rare family needs. Before Ari, I was Amara’s medical secretary, case manager, advocate, and chief of staff. All at once. I want Ari to do that work, so I get to be her mom.
These are the things we are building Ari to do. I would love your feedback.
FOXG1 Research Foundation
A gene therapy in 9 years. For $22M instead of a billion.
When my daughter Amara was diagnosed with FOXG1 syndrome, there was no treatment. Most rare diseases never get one. The traditional path costs $100M to $1B and takes a decade or more. So with Nicole Johnson, a fellow FOXG1 mom, I built a different model — parent-led, independently sponsored, designed from day one to move at the speed our children’s lives demand. In January 2026, the FDA cleared FRF-001 for first-in-human trials.
9
years
From diagnosis to FDA-cleared first-in-human trial.
$22
M
Instead of $100M – $1B traditional cost.
101
Families’ records — FDA-accepted as evidence.
14
Countries. 1,000+ families moving together.
About Nasha’s work with FOXG1 Research Foundation
“That work has been incredible and inspiring — to see how you can do science differently.”
Dr. Priscilla Chan
Co-founder, Chan Zuckerberg Initiative
Why I do this
Amara.
Amara is ten. She has never said a word. She lives with daily seizures and other complications, yet has a positive energy that lights up my life. My biggest fear is her life without me. That is what gets me out of bed.
If you have lived a version of this story, or if you want to help build a world where fewer families have to, I would love to talk.
Together
We are doing this together.
I am part of a network of rare disease parents, founders, and advocates working on different conditions, sharing what is working and what is not. We sit on each other’s boards. We read each other’s drafts. We celebrate each other’s wins like they are our own, because in a real way they are.
We are all wanting, working, and waiting for the same thing, just for different children.
These are some of the most extraordinary builders I have ever known.
CNBC Cures Summit
Global Genes Conference
Joint Advocacy Event
American Epilepsy Society Annual Meeting
Rare Disease Summit
At the table
Representing the Rare Disease Cause
Rare disease isn’t just a product problem. It’s an economic problem, a policy problem, and a public-imagination problem. I show up wherever those conversations are happening.
2026
The White House Rare Disease Forum
First spotlight speaker at the inaugural forum, on the economics of rare disease drug development.
Watch →
2026
CNBC
“A mom and tech entrepreneur building AI advocate for rare-disease families like hers.”
Read →
2026
Inside Philanthropy
The deepest profile written on parent-led drug development, FRF, and the new model rare disease needs.
Read →