iiinova — where your digital self keeps evolving

Heather Stone @idepiheather.bsky.social · 22/09/2026

A child with a nearly always-fatal “brain-eating amoeba.” An unexpected recovery. And a remarkable example of what can happen when the right people, evidence, and treatments come together. I’ll tell the story at FDA Grand Rounds: 📅 Sept. 24 | 🕛 12 PM ET www.fda.gov/science-rese... #RareDisease

An image of the Balamuthia mandrillaris amoeba

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Heather Stone @idepiheather.bsky.social · 18/08/2026

I encourage everyone to share their treatment experiences on CURE ID today by visiting - cure.ncats.io! #LymeX #Spoonie @cureid.bsky.social #lymediseaseawareness #LymeX

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Heather Stone @idepiheather.bsky.social · 18/08/2026

Thank you to #FDA and #NCATS #NIH for the collaboration and support of #CUREID. We have an opportunity to help a community with a huge unmet need for #treatment.

cure.ncats.io

CURE-ID

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Heather Stone @idepiheather.bsky.social · 18/08/2026

We need to learn from patient’s / clinician’s experiences, to understand all of the existing drugs that could benefit patients today, like those with #LymeDisease, #alphagalsyndrome & other #tickbornediseases.

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Heather Stone @idepiheather.bsky.social · 15/07/2026

I'm honored to be a finalist for the GovCIO Media & Research Health IT Summit Health Advocate Flywheel Award for my work with @fda.gov and NCATS/NIH on #drugrepurposing and CURE ID (cure.ncats.io) @cureid.bsky.social I'd greatly appreciate you taking a moment to vote by July 17th: govc.io/qwTrdL

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Heather Stone @idepiheather.bsky.social · 10/11/2025

It is an honor to have our story recognized by @astmh.bsky.social! #TropMed25 is an important chance to share novel approaches to treating neglected diseases. I ask that you share your treatment experiences on CURE ID (cure.ncats.io). This way others may benefit the way Alaina did!

cure.ncats.io

CURE-ID

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Reposted by Heather Stone

ASTMH @astmh.bsky.social · 09/11/2025

"The Free-Living Bureaucrat" by Michael Lewis in the @washingtonpost.com wins this year's Communications Award for documenting the life-saving role the FDA plays in ensuring safe and affective emerging treatments. Give it a read: www.washingtonpost.com/opinions/int... #TropMed25

washingtonpost.com

Opinion | The free-living bureaucrat

Michael Lewis on Heather Stone of the Food and Drug Administration.

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Heather Stone @idepiheather.bsky.social · 09/09/2025

Yes, very much appreciated the call out and enjoyed the conversation today - lots of talk about repurposing!

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Heather Stone @idepiheather.bsky.social · 12/04/2025

Print the poster for your office/clinic! Visit the site today: cure.ncats.io/pilot-overvi...

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Heather Stone @idepiheather.bsky.social · 12/04/2025

The #SPAGN conference brings together a vibrant community of #Sarcoma advocates, and I'm thrilled to be a part of it! As we engage with this event, I invite patients/caregivers/clinicians to share their invaluable Sarcoma treatment experiences on CURE ID at cure.ncats.io/pilot-overvi... or the app.

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Heather Stone @idepiheather.bsky.social · 04/04/2025

So please don’t wait, visit cure.ncats.io or download the CURE ID mobile app today and share your treatment experience with an existing drug being used in a new way.

A flyer on CURE ID about its use as a treatment registry for drug repurposing, describing how users can share and explore treatment experiences.

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Heather Stone @idepiheather.bsky.social · 04/04/2025

Anyone can now submit a report to CURE ID - whether you are a patient, care partner/caregiver, or healthcare provider and it’s not limited to infectious diseases, you can add a report on nearly any disease where there are inadequate treatment options.

cure.ncats.io

CURE-ID

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Heather Stone @idepiheather.bsky.social · 04/04/2025

However, for CURE ID to reach it’s potential, we need YOU to share your treatment experiences in order for the platform to help more patients and clinicians in situations like Alaina’s.

cure.ncats.io

CURE-ID

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Heather Stone @idepiheather.bsky.social · 04/04/2025

I had an incredible surprise last night! See minute 27 with Jon Stewart. I’m grateful Michael Lewis is shedding light on the vital work my team is doing at the FDA/NIH. This acknowledgment is a testament to the tireless efforts of individuals across the government. youtu.be/79_n1FKZwHo

youtu.be

Who Is Government? Storytime with Michael Lewis | The Weekly Show

YouTube video by The Weekly Show with Jon Stewart

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Reposted by Heather Stone

Sarcoma Foundation of America (SFA) @curesarcoma.bsky.social · 14/03/2025

Discover how CURE ID fosters collaboration among researchers and uncovers new applications for existing treatments in this article featuring the story of a family's experience with a rare disease that had no real options without their help. www.washingtonpost.com/opinions/int...

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Heather Stone @idepiheather.bsky.social · 14/03/2025

Thanks Ilan! That’s very kind of you

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