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Susannah Fox

@susannahrfox.bsky.social
346 followers 229 following 200 posts

Author, REBEL HEALTH. Amateur sunflower farmer. There are people who would love to help you, if only they knew how to find you.

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Susannah Fox @susannahrfox.bsky.social · 31/07/2026
Today's crop 🌻
Orange sunflower flanked by two unopened budsUnopened bud of a sunflower appears attached like a conjoined twin to the back of an orange sunflower in bloomSunflower bud about to open. Yellow petals still folded around a brown disk with spiky green leaves all around it.
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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 · 31/07/2026
Reading: J&J reaches sweeping talc deal that could end decade of litigation, by Dietrich Knauth (Reuters) www.reuters.com/business/hea...
reuters.com
J&J reaches sweeping talc deal that could end decade of litigation
Johnson & Johnson ​said on Monday it would pay an estimated $5.5 billion to resolve tens of thousands of lawsuits alleging its baby powder and ‌other talc products cause ovarian cancer, in a landmark ...
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f16col.bsky.social @f16col.bsky.social · 12/07/2025
undark.org/2025/07/08/b...
undark.org
Book Review: The Tainted Legacy of an Iconic Health Care Giant
"No More Tears," by Gardiner Harris, is a scathing expose of Johnson & Johnson and its many missteps and transgressions.
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Silly Goose Baker @bakedbyramal.bsky.social · 29/07/2026
Everyone should read No More Tears by Gardiner Harris for insight into the decades long coverup of the asbestos in the talcum powder
A hand holding a book entitled “No More Tears” by Gardiner Harris
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Susannah Fox @susannahrfox.bsky.social · 14/07/2026
The instinct to seek peer advice springs up in every region of the U.S., among Republicans and Democrats, and every income group. Young adults stand apart on mental health and financial stress: 18-29 year-olds seek peer advice online at roughly five to six times the rate of adults ages 65 and older
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Susannah Fox @susannahrfox.bsky.social · 14/07/2026
A Tennessee woman found an online weight loss group useful. “I didn’t want advice from people I see every day because of shame and I didn’t want to hear it all day every day from relatives,” she wrote. “I liked the advice, validation, and practical tips the group contained.”
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Susannah Fox @susannahrfox.bsky.social · 14/07/2026
We knew the magic would be in the details so we asked respondents to tell us about the most recent time they sought peer advice online: A Missouri man in his 20s wrote, “I was looking for the advice of people who also dealt with relationship and home stress while not having insurance for therapy.”
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Susannah Fox @susannahrfox.bsky.social · 14/07/2026
Only 29% of U.S. adults say most people can be trusted. Yet 80% have looked online for peer advice. Survey results: susannahfox.com/2026/07/14/w...
susannahfox.com
We don’t trust each other. We still need each other.
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Susannah Fox @susannahrfox.bsky.social · 16/06/2026
I appreciate the 14% of respondents who were brave enough to say "I don't know." Source: Telescope/Gallup poll conducted Nov-Dec 2024. Full report: news.gallup.com/poll/654905/...
news.gallup.com
Americans Use AI in Everyday Products Without Realizing It
Nearly all Americans use AI products, but many don't realize it. Most say the government and businesses are equally liable for reducing its potential harms.
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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 · 10/06/2026
I'm not a cardiologist, I don't have HCM risk factors, but I care about people who do and now I've got more knowledge and questions to ask. We are living in interesting times /understatement
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Susannah Fox @susannahrfox.bsky.social · 10/06/2026
Claude went on: "The study argues the current guidelines leave meaningful risk on the table by relying on simpler, older measures. The authors call for routine CMR imaging and NT-proBNP testing to be incorporated into standard HCM evaluation — something the guidelines don't yet fully reflect."
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Susannah Fox @susannahrfox.bsky.social · 10/06/2026
I asked Claude to analyze the difference. "The guidelines focus primarily on predicting sudden cardiac death risk to guide ICD implantation decisions. The HCMR study broadens this by also predicting heart failure outcomes (transplant, mechanical heart pump, HF death)..."
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Susannah Fox @susannahrfox.bsky.social · 10/06/2026
I read the study but wanted to better understand how it might change clinical guidelines for management of hypertrophic cardiomyopathy www.jacc.org/doi/10.1016/...
jacc.org
2024 AHA/ACC/AMSSM/HRS/PACES/SCMR Guideline for the Management of Hypertrophic Cardiomyopathy: A Report of the American Heart Association/American College of Cardiology Joint Committee on Clinical Pra...
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Susannah Fox @susannahrfox.bsky.social · 10/06/2026
This study caught my eye today: Predictors of Long-Term Outcomes in Hypertrophic Cardiomyopathy (JAMA) jamanetwork.com/journals/jam...
jamanetwork.com
Hypertrophic Cardiomyopathy Registry (HCMR) Outcomes
This cohort study examines whether combining clinical history, imaging, and genetic and blood markers could predict risk of adverse events in patients with hypertrophic cardiomyopathy, including sudde...
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Susannah Fox @susannahrfox.bsky.social · 13/04/2026
Here's the full list, recently re-checked, spruced up, and ready to inspire you to start your own org, invest in one of these amazing companies, or otherwise contribute to the patient-led revolution: susannahfox.com/patient-led-...
susannahfox.com
Patient-led Innovation
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Susannah Fox @susannahrfox.bsky.social · 13/04/2026
Thanks to @epatientdave.bsky.social I am adding Flok to my ongoing list of patient-, survivor-, caregiver-led innovations. Flok is both a community for people with inherited metabolic disorders AND a research platform: flok.org
flok.org
flok | Innovation of Care
flok is an app and research platform designed to improve the care and treatment of inborn errors of protein metabolism.
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Susannah Fox @susannahrfox.bsky.social · 06/04/2026
"When you speak up, there is a chance you move the needle, and your courageous actions can compound to create greater institutional courage." - Resa E. Lewiss, MD www.insidehighered.com/opinion/care...
insidehighered.com
Advice for Working With an Institutional Enabler (opinion)
If you work with someone who dismisses allegations of unprofessional workplace behaviors, you do have options.
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Susannah Fox @susannahrfox.bsky.social · 20/03/2026
Boredom and anger are a potent mix. Especially when a chemist is stuck at home with a problem she knows she can solve. A dose of inspiration: susannahfox.com/2026/03/20/w...
susannahfox.com
Wow! How? StomaEase
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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 · 07/03/2026
If you have time for more, start the video at 2:00 and watch Lindsay Guentzel call on us to defend science, attract top talent (including from outside the U.S.), and continue funding both care and research in the best interests of our communities. She does not mince words.
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Susannah Fox @susannahrfox.bsky.social · 07/03/2026
The videocast of Rare Disease Day at NIH is now available. My pick: session on how AI can be leveraged in rare disease clinical care starts around 2:15 videocast.nih.gov/watch/8ada3c...
videocast.nih.gov
NIH VideoCast - Rare Disease Day at NIH 2026
There are more than 10,000 known rare diseases and only a few hundred have safe, effective treatments. In the United States, rare diseases affect millions of people. On February 27, 2026, NIH will hos...
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Susannah Fox @susannahrfox.bsky.social · 26/02/2026
Here's the agenda for Rare Disease Day NIH, which will run from 9am-5pm Eastern: ncats.nih.gov/sites/defaul...
ncats.nih.gov
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Susannah Fox @susannahrfox.bsky.social · 26/02/2026
My favorite annual symposium, Rare Disease Day at NIH, will be livestreamed: videocast.nih.gov/event-calendar
videocast.nih.gov
NIH VideoCast
videocast.nih.gov
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Susannah Fox @susannahrfox.bsky.social · 23/02/2026
Loved this Freakonomics episode about repurposing drugs to treat rare diseases: freakonomics.com/podcast/are-...
freakonomics.com
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A-Danielle Grenier · Ma vie de zèbre @adangrenier.bsky.social · 22/02/2026
En cette dernière semaine du mois de sensibilisation aux maladies rares, je tiens à rendre hommage à la force incroyable des personnes qui en sont atteintes. 🦓👊 #ZebraStrong #ShowYourRare
Texte blanc sur fond noir "Forte comme un zèbre" avec un petit zèbre style cartoon et le logo de Ma vie de zèbre en petit dans le coin inférieur droit.Texte blanc sur fond noir "Fort comme un zèbre" avec un petit zèbre style cartoon et le logo de Ma vie de zèbre en petit dans le coin inférieur droit.
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Susannah Fox @susannahrfox.bsky.social · 22/02/2026
15% of unpaid caregivers nationally live in rural areas (that's roughly 14 million people) - @ssrsresearch.bsky.social ssrs.com/insights/wil...
ssrs.com
With $50 Billion Pledged to Strengthen Rural Health Care, Will Rural Caregivers be Overlooked? - SSRS
Kristen Purcell, PhD  |  SSRS Sarah Stephens Winnay  |  ARCHANGELS Susannah Fox  |  Peer-to-Peer Healthcare Expert   The Rural Health Transformation Program (RHTP), part of the Trump Administration’s ...
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Susannah Fox @susannahrfox.bsky.social · 22/02/2026
Rare disease households are likely to be caregiver households: 55% of adults living in rare disease households say that they provided unpaid care to a friend or family member who needs assistance in the past 12 months susannahfox.com/2026/02/20/c...
susannahfox.com
Caregivers in Rare Disease Households
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Susannah Fox @susannahrfox.bsky.social · 20/02/2026
8% of U.S. adults say they or someone they live with has ever been told by a doctor or other health professional that they have a rare disease (defined as one affecting fewer than 200,000 people in the U.S.) susannahfox.com/rare-disease...
susannahfox.com
Rare Disease in the U.S. 2025
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Susannah Fox @susannahrfox.bsky.social · 20/02/2026
#RareDiseaseDay at NIH will be held on Friday, Feb. 27, 2026 ncats.nih.gov/news-events/...
ncats.nih.gov
Rare Disease Day at NIH
Each year, we support this event to raise awareness about rare diseases, the people they affect, and partnerships that promote research and advance knowledge of new treatments.
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Susannah Fox @susannahrfox.bsky.social · 20/02/2026
#RAREDC2026 is a Congressional lobbying program of the EveryLife Foundation for Rare Diseases being held Feb. 24-26, 2026 everylifefoundation.org/rare-advocat...
everylifefoundation.org
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Susannah Fox @susannahrfox.bsky.social · 20/02/2026
FDA #RareDiseaseDay will be held on Monday, Feb. 23, 2026 www.fda.gov/news-events/...
fda.gov
Public Meeting: FDA Rare Disease Day 2026
The public meeting will be held on February 23, 2025, from 9 a.m. to 4 p.m ET.
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Susannah Fox @susannahrfox.bsky.social · 20/02/2026
Rare Disease Week is a chance for patients, advocates, scientists, clinicians, & policymakers to learn from each other about how to build solutions on the frontiers of medicine. Events happening this week...
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Susannah Fox @susannahrfox.bsky.social · 12/02/2026
"Healthcare conversations stay abstract because abstraction protects incumbents. Complexity diffuses accountability. When no one can clearly explain how money moves, no one can be held responsible for where it ends up." - another quote from Drugstore Cowboy, Alec Wade Ginsberg, PharmD, RPh
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Susannah Fox @susannahrfox.bsky.social · 12/02/2026
"When you imagine the consumer as a patient, opacity feels predatory. When you imagine the consumer as an employer, opacity can feel efficient." - Alec Wade Ginsberg, PharmD, RPh (aka Drugstore Cowboy) drugstorecowboy.com/p/ali-frazie...
drugstorecowboy.com
Ali–Frazier: Pharma Edition
Mark Cuban's face-off with Optum's CEO was really about who healthcare is actually for.
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Susannah Fox @susannahrfox.bsky.social · 12/02/2026
Hello! Curious if you go to the conferences. It's always a highlight for me when I can make it (even tho I'm not strictly a member of the community). So much warmth and fellow-feeling
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JAMA @jama.com · 30/12/2025
A growing movement seeks to ensure all clinicians are equipped to care for older adults. Learn more about the push for universal #geriatrics training. ja.ma/3YNe3g5
ja.ma
Geriatrics Training for All
This Medical News article discusses challenges and progress toward more widespread geriatrics training in medical school, residency, and health systems.
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Reposted by Susannah Fox
Pew Research Center @pewresearch.org · 12/12/2025
Most Americans say government has a responsibility to ensure health care coverage: pewrsr.ch/495emca
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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 MitfordYellow piece of paper with text: Welcome to Powell’s Books! Handwritten notes about the journalism sectionBook cover for Trouble Maker by Carla Kaplan
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Carla Kaplan @cktroublemaker.bsky.social · 26/11/2025
Publication day today! Perfect timing for this wonderful excerpt in Town & Country: www.townandcountrymag.com/leisure/arts...
townandcountrymag.com
Jessica Mitford Was Raised to Be an Aristocrat. Instead, She Became a Communist.
How a daughter of one of England’s most storied families ended up on the other side of the world—and the political spectrum—from her parents and infamous siblings.
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Mara Wilson @marawilson.bsky.social · 12/11/2025
So proud of my dear friend Sam for writing this. So furious he has to go through it. www.nytimes.com/2025/11/11/o...
nytimes.com
Opinion | Cancer Patients Like Me Are Casualties of MAHA’s Hypocrisy
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Timothy Caulfield @caulfieldtim.bsky.social · 30/10/2025
The power of lies. The power of doubtmongering. Misinformation kills. The decrease in confidence in the (much researched, safe & tremendously effective) MMR vaccine...?👇 www.annenbergpublicpolicycenter.org/public-not-h... via @asc.upenn.edu
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Susannah Fox @susannahrfox.bsky.social · 30/10/2025
Yes, I do this! And as a survey researcher I try to include free-text, no-limit boxes and love when people give me feedback on the questions we ask
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SSRS @ssrsresearch.bsky.social · 30/10/2025
From social media platforms to gaming communities, digital life surrounds adolescent boys. To better understand the impact of this digital lifestyle, Common Sense surveyed more than 1,000 U.S. boys ages 11–17 on the SSRS Opinion Panel. www.commonsensemedia.org/research/boy...
commonsensemedia.org
Boys in the Digital Wild: Online Culture, Identity, and Well-Being
From social media to gaming, apps, and more, adolescent boys spend hours each day online. Our new research reveals how this relates to their identities, relationships, and emotional well-being.
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Susannah Fox @susannahrfox.bsky.social · 23/10/2025
"Question: what HAPPENS when you stand your ground and tell the hospital it’s not safe for my father to be sent home? The forces pushing for discharge can be economic, and that’s a spine-stiffener for some hospitals." - @epatientdave.bsky.social susannahfox.com/2025/10/22/c...
susannahfox.com
Caregiver Survival Guide
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Bethany Brookshire @beebrookshire.bsky.social · 22/10/2025
I have been traveling and today I present to you...the thing I saw in the Frankfurt airport. Is it efficient? Undeniably. Does it probably work better than the normal way? Oh certainly. Produce less of a mess? Probably? But the existence of Condiment Udders gives me a deep, aghast disquiet.
A hotdog and pretzel stand with large hanging bottles of mustard, ketchup, and mayonnaise. The bottoms contain squeeze tubes to dispense the condiments.
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Susannah Fox @susannahrfox.bsky.social · 22/10/2025
If you are a caregiver, learn these magic words: “It is not safe for my loved one to return home.” More peer health advice: susannahfox.com/2025/10/22/c...
susannahfox.com
Caregiver Survival Guide
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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 familyMake yourself a care mapDon’t be afraid to talk about dying
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Susannah Fox @susannahrfox.bsky.social · 19/10/2025
Sunday morning read: www.npr.org/2025/10/18/n...
npr.org
A caregiver's survival guide: Advice from people who've been there
Family caregivers offer their wit, wisdom and survival tips for the hardest unpaid job in America.
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