iiinova — where your digital self keeps evolving

Susannah Fox @susannahrfox.bsky.social · 31/07/2026

If you want context for the J&J settlement news, read or listen to NO MORE TEARS by Gardiner Harris. You won't be the same after: www.penguinrandomhouse.com/books/647408...

Cover of the book No More Tears: the dark secrets of Johnson & Johnson by Gardiner Harris. "A masterpiece of muckraking" - Publishers Weekly

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Susannah Fox @susannahrfox.bsky.social · 16/06/2026

I admit I love a "gotcha" survey question. Gallup asked people if they had used an AI-enabled app or platform in the past week and fully 50% said no, they had not. In fact, 99% said they used at least one of 6 AI-enabled products in the past week.

Nearly all Americans use at least one AI-enabled product weekly. Bar chart showing the in the past seven days, only 1% of U.S. adults used zero, 2% used one, 5% used two, 9% used three, 20% used four, 31% used five, and 31% used all six AI-enable products listed (personal virtual assistant like Alexa or Siri; navigation apps; weather apps; social media, streaming services like Netflix, and online shopping apps or sites). Survey conducted by Telescope/Gallup Nov 26-Dec 4, 2024

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Susannah Fox @susannahrfox.bsky.social · 19/03/2026

The news is terrible so here's a sunflower growing against all odds at the top of a mountain near Santa Barbara, CA 🌻

A yellow sunflower growing in an unlikely spot -- the extremely dry rocky side of a mountain with little vegetation nearby.

Closer picture of the unlikely sunflower growing in dry, rocky soil

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Susannah Fox @susannahrfox.bsky.social · 10/12/2025

Digging into TROUBLE MAKER by @cktroublemaker.bsky.social - had to get the hardback after listening to her description of photos on the “He’s Just…” podcast w Jules Douge

Book cover for the American Way of Death by Jessica Mitford

Yellow piece of paper with text: Welcome to Powell’s Books! Handwritten notes about the journalism section

Book cover for Trouble Maker by Carla Kaplan

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Susannah Fox @susannahrfox.bsky.social · 19/10/2025

NPR’s feature on caregiving is packed with wisdom gained from lived experience - including mine

Advice from caregivers: Expand your family

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Susannah Fox @susannahrfox.bsky.social · 14/10/2025

Caregiving in America: While caregiving is more prevalent among older adults, a full quarter (27%) of 18- to 29-year-olds report providing unpaid care to a friend or loved one. The average age of caregivers in the U.S. is 50. susannahfox.com/2025/09/25/c...

GenZ are caregivers too: 27% of 18- to 29-year-olds report providing unpaid care to a friend or loved one in the year prior to the survey. Intensity drivers of younger and older caregivers: Caregivers under age 50 are more likely to experience family disagreements, money concerns, worrying that it is all too much, and feeling stressed out or depressed. Older caregivers are more likely to say they are confident navigating money and benefits for others. - ARCHANGELS

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Susannah Fox @susannahrfox.bsky.social · 16/08/2025

I LOVED this book - a medical mystery solved by the patient herself. Find out more, order your copy: www.bloomsbury.com/us/manufactu...

Book cover for Manufacturing My Miracle: One Woman's Quest to Create her Personalized Gene Therapy, by Jill Dopf Viles. Ilustrated by a red and blue double helix. In the center is a picture of the author as a young girl

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Susannah Fox @susannahrfox.bsky.social · 11/07/2025

"One of the biggest challenges is that not only are you learning to keep yourself alive, but you are also having to educate everyone around you" - Alex Durussel-Baker of Diabetes by Design. To combat misinformation, she started subverting famous designs to trick people into learning about diabetes.

3 posters are pasted on a wall above 3 folding chairs. Poster one reads "Type 1 Diabetes" and is in the style of a Beatles album cover. Poster two reads "Rage Bolus" and features a fist holding an insulin pen. Poster three is a stylized portrait of a man with the word "Insulin" under his image.

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Susannah Fox @susannahrfox.bsky.social · 20/05/2025

Reaction #2: Medication adherence is an expensive, vexing problem for all stakeholders, including patients & caregivers. I'd argue that aspects pop up in all 4 quadrants of the Rebel Health matrix:

Horizontal axis labeled Needs not met at the far left; Needs met at the right. Vertical axis labeled Visible at the top; Invisible at the bottom. Along the bottom of the image is the credit line: Rebel Health by Susannah Fox

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Susannah Fox @susannahrfox.bsky.social · 19/05/2025

A seed husk doggedly hangs on 🌱💛🌻

A green sunflower seedling with a black seed husk on a lower leaf. There’s a white seashell behind the seedling to show the contrast.

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Susannah Fox @susannahrfox.bsky.social · 31/03/2025

Nostalgia hit: a newspaper box along a country road. Covered in lichen, faded, about to be obscured in the gathering (real and metaphorical) darkness, it's a vestigial @washingtonpost.com box in Washington, VA.

A white newspaper box along a country road is covered in lichen. Faded letters are barely legible: Washington Post. There's a church in the background and the light is dimming.

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Susannah Fox @susannahrfox.bsky.social · 13/03/2025

Seeing my book in the wild never gets old. LAX -> DCA 💛💙

Yellow book with blue type: Rebel Health by Susannah Fox is pulled from a bookstore shelf labeled Science

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Susannah Fox @susannahrfox.bsky.social · 01/03/2025

Yesterday's #RallyforRare was a community-led event featuring talks on genetic testing, clinical trial design, data registries, and peer-to-peer health care. It was a room of scientists & advocates who care about rare & undiagnosed patients & families. Defiant. Fierce. Incredible.

15% of US adults live in a household affected by rare disease or an undiagnosed illness

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Susannah Fox @susannahrfox.bsky.social · 28/02/2025

Mitchell Herndon died in 2019 from Mitchell syndrome (yes, named for him) and in 2020 he was listed as an author in a journal article about this #RareDisease - beautiful example of patient-led inquiry

A slide showing a collage of a journal article and slides

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Susannah Fox @susannahrfox.bsky.social · 26/02/2025

Zeev Neuwirth asked questions that allowed me to highlight the #raredisease community’s influence on me, personally, and on my research, so I’m especially pleased that this episode is being released during Rare Disease Week www.creatinganewhealthcare.com/2025/02/25/e...

"No matter what you're sufering, you are not alone. There are people who would love to help you if only they knew how to find you." - Susannah Fox, author of Rebel Health: A field guide to the patient-led revolution in medical care. Creating a new health care with Dr. Zeev Neuwirth.

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Susannah Fox @susannahrfox.bsky.social · 25/02/2025

I partnered with @ssrsresearch.bsky.social + ARCHANGELS + the Association on Aging in New York to field the survey. Topline and further details about our methodology at the bottom of this page: ssrs.com/insights/rar...

This study was conducted by SSRS on its Opinion Panel Omnibus platform for Susannah Fox and ARCHANGELS, with support from the Association on Aging in New York. The SSRS Opinion Panel Omnibus is a national, twice-per-month, probability-based survey. Data collection was conducted on two waves of the omnibus, from January 17 to January 21, 2025 and from February 7 to February 10, 2025, among a total sample of N = 2,012 respondents. The survey was conducted via web (n = 1,952) and telephone (n = 60) and administered in English (n = 2,012).

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Susannah Fox @susannahrfox.bsky.social · 25/02/2025

#RareDiseaseDay is on Feb. 28 and I'm honored to share results from the first probability-based survey to measure the population of people affected by rare disease or undiagnosed illness: ssrs.com/insights/rar...

Of those half have gone online to find others with similar health concerns

Telehealth and use of AI tools for health info are higher among those living in rare/undiagnosed illness households

A rare disease is one that affects fewer than 200,000 people in the US

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Susannah Fox @susannahrfox.bsky.social · 22/02/2025

On Tuesday, 3/25, thanks to a partnership with @ssrsresearch.bsky.social + ARCHANGELS, we will release what we believe is the first probability-based national survey to measure the #RareDisease population + those living with undiagnosed illness

In dark times shine your light brighter. #Paint the storefronts. Illustration shows a hand holding a lightbulb and stars surrounding the words. Photo by Ted Eytan in 2020.

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Susannah Fox @susannahrfox.bsky.social · 13/02/2025

Flashback to the best #Valentine ever: my food-allergy kid's classmates clipped the ingredient list for the attached candy. Love is everywhere. Kindness matters. If your kid's class has anyone with food allergies, please consider how to keep them safe and make them feel included.

A child's Valentine card that includes the clipped ingredient list for the candy enclosed.

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Susannah Fox @susannahrfox.bsky.social · 07/02/2025

Sharing a bit of beauty from last summer 🌻

The back of a sunflower in bloom with sunlight illuminating the yellow petals

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Susannah Fox @susannahrfox.bsky.social · 06/02/2025

The 1 vs 8,765 infographic quickly spread across the world as an arresting image of patient-led care and can be downloaded in Swedish, English, Spanish, Italian, and German. And now, she's making necklaces: 1 vs 364. @sarariggare.bsky.social is a #RebelHealth icon 💛💙

Necklace made up of almost all blue beads. One yellow bead stands out. There is a silver pendant of the dopamine molecule. Necklace is coiled on top of a light brown dog.

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Susannah Fox @susannahrfox.bsky.social · 06/02/2025

Sharing a story about creativity and resilience: @sarariggare.bsky.social lives with Parkinson’s disease and devised this infographic to represent the hours she spends on self-care:

A rectangle nearly covered in blue dots. One red dot is highlighted with text that reads: To manage her Parkinson's disease, Sara Riggare spends 1 hour in neurological healthcare and 8,765 hours in selfcare per year. www.riggare.se Sara Riggare, 2014

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Susannah Fox @susannahrfox.bsky.social · 25/01/2025

Unleashing Patient Innovation - The Nocturnists thenocturnists.org/podcast/unle...

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Susannah Fox @susannahrfox.bsky.social · 26/11/2024

Conversations about the end of life don't have to be tragic and sad. There can be laughter. There can be the relief of knowing that legal documents exist. Talk to your loved ones.

Can you and your loved ones answer these questions?

1. On a scale of 1 to 5, where do you fall on this continuum: 1 = Let me die without medical intervention; 5 = Don’t give up on me no matter what, try any proven and unproven intervention possible.

2. If there were a choice, would you prefer to die at home, or in a hospital?

3. Could a loved one correctly describe how you’d like to be treated in the case of a terminal illness?

4. Is there someone you trust whom you’ve appointed to advocate on your behalf when the time is near?

5. Have you completed any of the following: written a living will, appointed a health care power of attorney, or completed an advance directive?

Engagewithgrace.org The One Slide Project

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Susannah Fox @susannahrfox.bsky.social · 26/11/2024

Every year at Thanksgiving, I repost this slide created by Engage With Grace & I urge people to talk with their loved ones about what they want at the end of life. [ALT text included]

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Susannah Fox @susannahrfox.bsky.social · 22/11/2024

If you are near the Capitol and you have a copy of your book, you have to snap a pic. Those are the rules. Also: hi! I heard we talk about science, health care, and innovation here

A woman stands in front of the US Capitol holding a yellow and blue book titled Rebel Health

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