Susannah Fox

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

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

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.

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...

"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...

A hotdog and pretzel stand with large hanging bottles of mustard, ketchup, and mayonnaise. The bottoms contain squeeze tubes to dispense the condiments.

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.

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...

Advice from caregivers: Expand your family

Make yourself a care map

Don’t be afraid to talk about dying

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

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.

Sunday morning read: www.npr.org/2025/10/18/n...

1+ million clinical trials are conducted annually. A shocking few ask patients (or even clinicians) for input on physical, economic, and psychological burdens, much less the questions they hope to answer. What happens? Failure. Waste.

What can be done? Read:
susannahfox.com/2025/10/16/p...

Novartis was not sure that they should invest in a cure for such a rare disease, but patients organized a petition that reached the CEO & a Phase II trial was approved.

susannahfox.com/2023/12/21/w...

There's precedent for patients demanding - and winning - access to a drug that saved them in a clinical trial: Gleevec. I hope patients win here, too.

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

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...

What an honour to have our book on HIV and COVID nominated for the Foundation of Sociology of Health and Illness with such amazing books including the fab Selling Immunity!

@bsa-medsoc.bsky.social @nagingtonuom.bsky.social

Dan Quinn’s unusual exercise brought the Commanders closer — and helped them surprise the NFL

Peer support is powerful: "We were talking about, “What’s the thing that’s keeping you up at night right now?”

By us saying them, it allowed for (others to say), “Yeah, I’m dealing with that too.” Then you can collaborate on it."
www.nytimes.com/athletic/659...

Sunflower just starting to bloom. Spiky green leaves cover most of the disk. Five yellow petals are unflolded

Sunflower half open, with a half circle of florets visible on the center disk

Sunflower almost fully in bloom. Three yellow petals are still folded over the brown disk of florets

🌻

At the recent Moebius Syndrome Foundation conference, Kathleen Bogart, PhD, led a discussion about ableism and asked, "How would our world be different if everyone had Moebius?"

A child spoke up first: "People would be kinder to each other." susannahfox.com/2025/08/29/w...

Mental Health Tech Isn’t Reaching Rural Youth The tools are there. Access, trust, and relevance may not be.

Mental Health Tech Isn’t Reaching Rural Youth, by Ben Miller open.substack.com/pub/mentalhe...

Orange petals surround a brown disk of florets on a sunflower that has grown over six feet tall

Update 🌻

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

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

Jill Dopf Viles died one month before her book, MANUFACTURING MY MIRACLE, was released so I'm doing what I can to lift up her incredible story susannahfox.com/2025/08/15/j...

Thank you! I love finding new examples of patient-led ingenuity - so happy you found my book useful 💛💙

Large sunflower with yellow petals and a brown disk - half open, with spiky green leaves folded over the top

Update

Orange petals surround a brown disk, two bees harvesting the pollen

Velvet Queen sunflower

Tight green sunflower bud

Sunflower bud starting to open, spiky green leaves surround yellow petals

Potential, cracking open

From Patient to Pioneer: Frans Frielink’s Journey with Alpha-1 MZ - Global Liver Institute My name is Frans Frielink, and I have over 40 years of experience in the semiconductor market in research and business. My background is deeply rooted in analytical thinking, problem-solving, and tran...

What do you do when clinicians dismiss your concerns? Frans Frielink dug into the medical literature, talked with other patients, and made the connections nobody else saw. Great #RebelHealth story: globalliver.org/from-patient...

AI Stepped In Where the System Stepped Out substack.com/inbox/post/1...

Read more: susannahfox.com/2025/07/11/d...

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.

"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.

Type 1 Diabetes Companion Cards Eye catching card-based toolkits to help navigate the highs and lows of living with type 1 diabetes.

So excited to see these beautiful, useful resources in the world! I just backed Type 1 Diabetes Companion Cards on @kickstarter.com www.kickstarter.com/projects/884...

Thank you! End the Legacy is on my list - scroooollll down. Right now the list is alphabetical but I’d love suggestions on how to make it more useful