Susannah Fox
@susannahrfox.bsky.social
Author, REBEL HEALTH. Amateur sunflower farmer. There are people who would love to help you, if only they knew how to find you.
Reposted by Susannah Fox
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...
www.nytimes.com/2025/11/11/o...
Opinion | Cancer Patients Like Me Are Casualties of MAHA’s Hypocrisy
www.nytimes.com
November 12, 2025 at 1:49 AM
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...
www.nytimes.com/2025/11/11/o...
Reposted by 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
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
October 30, 2025 at 4:13 PM
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
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
Reposted by Susannah Fox
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
October 30, 2025 at 2:11 PM
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...
Caregiver Survival Guide
susannahfox.com
October 23, 2025 at 3:02 PM
"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...
Reposted by Susannah Fox
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.
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.
October 22, 2025 at 2:26 PM
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.
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...
Caregiver Survival Guide
susannahfox.com
October 22, 2025 at 12:11 PM
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...
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
October 19, 2025 at 1:15 PM
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...
What can be done? Read:
susannahfox.com/2025/10/16/p...
Patient Input on Clinical Trials
susannahfox.com
October 17, 2025 at 3:23 PM
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...
What can be done? Read:
susannahfox.com/2025/10/16/p...
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.
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
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
October 14, 2025 at 7:10 PM
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.
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...
susannahfox.com/2025/09/25/c...
October 14, 2025 at 6:53 PM
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...
susannahfox.com/2025/09/25/c...
Reposted by Susannah Fox
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
@bsa-medsoc.bsky.social @nagingtonuom.bsky.social
September 10, 2025 at 10:40 AM
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
@bsa-medsoc.bsky.social @nagingtonuom.bsky.social
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...
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
September 5, 2025 at 6:00 PM
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...
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...
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...
A child spoke up first: "People would be kinder to each other." susannahfox.com/2025/08/29/w...
August 29, 2025 at 1:32 PM
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...
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, 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
August 21, 2025 at 7:35 PM
Mental Health Tech Isn’t Reaching Rural Youth, by Ben Miller open.substack.com/pub/mentalhe...
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
August 16, 2025 at 7:29 PM
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...
Velvet Queen sunflower
August 15, 2025 at 6:56 PM
Velvet Queen sunflower
Potential, cracking open
August 15, 2025 at 6:53 PM
Potential, cracking open
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
August 7, 2025 at 8:09 PM
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...
Reposted by Susannah Fox
AI Stepped In Where the System Stepped Out substack.com/inbox/post/1...
July 15, 2025 at 10:52 AM
AI Stepped In Where the System Stepped Out substack.com/inbox/post/1...
"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.
July 11, 2025 at 11:27 AM
"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.
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...
Type 1 Diabetes Companion Cards
Eye catching card-based toolkits to help navigate the highs and lows of living with type 1 diabetes.
www.kickstarter.com
July 10, 2025 at 11:58 AM
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...
I collect examples of patient-, survivor-, caregiver-led innovations. Please let me know if you have one to add to my list: susannahfox.com/patient-led-...
Patient-led Innovation
susannahfox.com
July 8, 2025 at 8:22 PM
I collect examples of patient-, survivor-, caregiver-led innovations. Please let me know if you have one to add to my list: susannahfox.com/patient-led-...
If people's needs are not being met by mainstream health care and they have the means to create their own solutions, they will.
Example: citizen-scientists found that psychedelics work to interrupt a cluster headache and prevent further episodes susannahfox.com/2025/06/27/w...
Example: citizen-scientists found that psychedelics work to interrupt a cluster headache and prevent further episodes susannahfox.com/2025/06/27/w...
Wow! How? Psychedelic Outlaws
susannahfox.com
July 1, 2025 at 11:36 AM
If people's needs are not being met by mainstream health care and they have the means to create their own solutions, they will.
Example: citizen-scientists found that psychedelics work to interrupt a cluster headache and prevent further episodes susannahfox.com/2025/06/27/w...
Example: citizen-scientists found that psychedelics work to interrupt a cluster headache and prevent further episodes susannahfox.com/2025/06/27/w...
Extraordinary peer-to-peer health care story: "Brazilian women had made a discovery that allowed them to safely have abortions at home, despite the country's abortion restrictions. That discovery eventually spread across the globe." www.npr.org/2026/01/01/1...
The Network: Saint-o-tec : Embedded
Part 1: In the mid-1980s, an OBGYN in Brazil noticed that far fewer pregnant women at his hospital were dying from abortion complications. It wasn't a coincidence. Brazilian women had made a discovery...
www.npr.org
July 1, 2025 at 11:33 AM
Extraordinary peer-to-peer health care story: "Brazilian women had made a discovery that allowed them to safely have abortions at home, despite the country's abortion restrictions. That discovery eventually spread across the globe." www.npr.org/2026/01/01/1...