Author | Lightnews

Reposted by Susannah Fox

Timothy Caulfield @caulfieldtim.bsky.social · 7d

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

2 14 35

Susannah Fox @susannahrfox.bsky.social · 7d

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

1

Reposted by Susannah Fox

SSRS @ssrsresearch.bsky.social · 7d

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...

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.

www.commonsensemedia.org

2

Susannah Fox @susannahrfox.bsky.social · 14d

"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...

Caregiver Survival Guide

susannahfox.com

1

Reposted by Susannah Fox

Bethany Brookshire @beebrookshire.bsky.social · 15d

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.

390 1.6K 6.7K

Susannah Fox @susannahrfox.bsky.social · 15d

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...

Caregiver Survival Guide

susannahfox.com

Susannah Fox @susannahrfox.bsky.social · 18d

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

Advice from caregivers: Expand your family

2

Susannah Fox @susannahrfox.bsky.social · 18d

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

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.

www.npr.org

1 1 1

Susannah Fox @susannahrfox.bsky.social · 20d

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...

Patient Input on Clinical Trials

susannahfox.com

2 2

Susannah Fox @susannahrfox.bsky.social · 23d

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...

Wow! How? Gleevec

susannahfox.com

Susannah Fox @susannahrfox.bsky.social · 23d

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.

The Sick Times @thesicktimes.org · 27d

A group of 53 people with #LongCOVID joined a clinical trial for Vyvgart. For many of them, the treatment changed everything.

Then, without warning, Argenx canceled the trial.

Most of them have now relapsed.

They're calling on the NIH and HHS to study the drug: bit.ly/48l1Qp5

A photo Nicole Barrick, a woman in a pink KN95 mask, receives an infusion of Vyvgart. The text reads, "The Sick Times. Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug. By Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White."

"For those living with Long COVID, every ounce of hope is hard-won. This isn’t just about physical symptoms. It’s about the emotional toll of being given hope — and then having it taken away." - Vyvgart clinical trial participants
Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White

1 1 1

Susannah Fox @susannahrfox.bsky.social · 23d

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

Reposted by Susannah Fox

Jaime Garcia Iglesias @jgarciaiglesias.bsky.social · Sep 10

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

2 7

Susannah Fox @susannahrfox.bsky.social · Sep 5

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...

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

www.nytimes.com

1

Susannah Fox @susannahrfox.bsky.social · Aug 30

🌻

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

4

Susannah Fox @susannahrfox.bsky.social · Aug 29

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...

1

Susannah Fox @susannahrfox.bsky.social · Aug 21

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

Mental Health Tech Isn’t Reaching Rural Youth

The tools are there. Access, trust, and relevance may not be.

open.substack.com

2

Susannah Fox @susannahrfox.bsky.social · Aug 19

Update 🌻

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

1

Susannah Fox @susannahrfox.bsky.social · Aug 16

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

Susannah Fox @susannahrfox.bsky.social · Aug 16

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...

Jill Dopf Viles, DIY scientist

susannahfox.com

1 1

Susannah Fox @susannahrfox.bsky.social · Aug 16

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

1 1

Susannah Fox @susannahrfox.bsky.social · Aug 16

Update

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

1

Susannah Fox @susannahrfox.bsky.social · Aug 15

Velvet Queen sunflower

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

Susannah Fox @susannahrfox.bsky.social · Aug 15

Potential, cracking open

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

1 1

Susannah Fox @susannahrfox.bsky.social · Aug 7

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...

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...

globalliver.org

1 1