Where you can find me
A select record of my public conversations on rare disease, drug development, and the case for parent-led research.
Press & profiles
In writing.
2026
CNBC Cures
“A mom and tech entrepreneur building AI advocate for rare-disease families like hers.”
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2026
Inside Philanthropy
A long-form profile on parent-led drug development, FRF, and the new model rare disease needs.
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2026
Pharma Boardroom
On the economics of ultra-rare drug development.
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2025
San Francisco Business Journal
On Citizen Health and the founding team’s bet on consumer-grade tools for rare patients.
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2023
Cafe Mom
A more personal profile — Amara, motherhood, and the work.
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Podcasts & video
In conversation.
2026
OnRare Innovators — BridgeBio
On building an FDA-cleared gene therapy outside the academic medical center model.
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2026
Global Genes RareCast
The parent-led playbook, and what it takes to run a foundation that ships a drug.
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2025
CheckRare
An interview on FRF’s regulatory strategy and the case for parent-sponsored gene therapy.
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2025
Vital Science — Charles River
On Citizen’s data infrastructure and what the FDA actually accepted as evidence.
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2023
CareTalk with David Williams
A wide-ranging conversation on rare disease and the consumer-tech opportunity.
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2022
I am BIO — BIO podcast
On translating patient advocacy into FDA-grade regulatory work.
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2022
WCG Clinical with Steve Smith
On clinical trials, registries, and what families can actually contribute.
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2021
Once Upon a Gene — Effie Parks
An early conversation on the FOXG1 Research Foundation and the work ahead.
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On stage
In person.
2026
Rare Disease Summit — Informa Connect
Keynote — the parent-led model and where it goes next.
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2025
ASGCT — The Business of Advocates
On the financial mechanics of foundation-sponsored drug development.
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2025
Advancing Brain Health Innovation Summit
Innovative solutions to solve healthcare’s most difficult problems.
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2024
Katie Couric SheLab
In conversation on rare disease, motherhood, and building from grief.
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2024
Cell and Gene Therapy Summit
A case study on FRF-001 and the cost-and-time arc of ultra-rare programs.
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2024
White House Rare Disease Forum
First spotlight speaker at the inaugural forum, on the economics of rare drug development.
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2023
Global Genes Rare Disease Advocacy Summit
On building a regulatory-grade dataset from the records families already had.
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2023
NIH Rare Disease Day
A talk to the NIH community on what closed-loop funding gets wrong.
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2023
Precision Medicine Worldwide Conference
On rare-disease cohorts as the testing ground for personalized medicine at scale.
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2019
Aspen Ideas Festival
An early talk on the founding of the FOXG1 Research Foundation.
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