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Susannah Fox

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Rebel Health

Wow! How? For Love & Life

June 4, 2024 By Susannah Fox Leave a Comment

Movie poster: For Love and Life: No Ordinary Campaign. Amazon Prime May 28. Two people embrace, smiling, looking up.

This essay is part of my LinkedIn newsletter series: Wow! How? Health. Brian Wallach and Sandra Abrevaya brought their second daughter home on the same day that he received a devastating diagnosis: amyotrophic lateral sclerosis (ALS). Brian was told he had six months to live. Seven years later, Brian is still alive. He and Sandra […]

Filed Under: Champions, Networkers Tagged With: ALS, Amy Tenderich, Anthony Carbajal, Brian Wallach, Casey Quinlan, diabetesmine, Elizabeth Jameson, Gilles Frydman, I AM ALS, Jamie Heywood, Katie McCurdy, Maggie Whittum, Michael Graves, Pictal Health, Rebel Health, Sandra Abrevaya, Stephen Heywood, Synapticure, Wow! How? Health, Yoko Sen

Wow! How? Mystery vs. Moms

May 24, 2024 By Susannah Fox 3 Comments

Wow! How? Health

When her daughter, Sara, transformed from an active teen to a nearly catatonic shell of a person, Eileen Quinn knew she had to take action. Unfortunately, since Sara lives with Down syndrome her symptoms were likely to be dismissed as sad but inevitable. But Quinn had a hunch that her daughter’s rapid decline was not […]

Filed Under: Champions, Networkers, Seekers Tagged With: Down syndrome, Eileen Quinn, Jonathan Santoro, Rebel Health, Richard Sima, Washington Post, Wow! How? Health

Covid and the Future of Health

May 10, 2024 By Susannah Fox Leave a Comment

Front entrance of Hotel Tabard Inn

You are cordially invited to a book talk & reception on Wednesday, May 29, at 7pm at the Tabard Inn in Washington, DC. Ryan Prior, author of The Long Haul, and I will discuss how innovative patients are changing medicine for the better and where we see this grassroots movement heading next. If you haven’t […]

Filed Under: key people, Networkers, Solvers Tagged With: Long Covid, Rebel Health, Ryan Prior, The Long Haul

Q&A with Deborah Kalb

May 6, 2024 By Susannah Fox Leave a Comment

Book cover: Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care by Susannah Fox. Blue type on a yellow field

Deborah Kalb’s blog is a treasure chest full of Q&As with authors and illustrators and I’m honored to now be part of it. 1. What inspired you to write Rebel Health, and how was the book’s title chosen? As a researcher, I spend time in communities led by patients and caregivers who build new medical and assistive […]

Filed Under: Champions, Networkers, Solvers Tagged With: AA, ACT-UP, Black Panther Party, disability, Esther Perel, Fountain House, La Leche League, Rebel Health

The Other 80

April 22, 2024 By Susannah Fox 2 Comments

Screenshot from Derek Sivers' TED talk How to start a movement

Claudia Williams created The Other 80 podcast to talk about how medical care only accounts for 20% of health outcomes. The other 80% includes factors like food, housing, transportation options, social connection, etc. I was honored to be interviewed for episode #27, now available wherever you listen to podcasts. You can hear in my voice […]

Filed Under: Champions, Networkers, peer-to-peer health care, Seekers, Solvers Tagged With: #wearenotwaiting, Claudia Williams, Dana Lewis, Derek Sivers, Hugo Campos, John Costik, Open Notes, Patient-Led Research Collaborative, Rebel Health, Sara Riggare, Stanford Medicine X

Wow! How? PEARS

April 12, 2024 By Susannah Fox Leave a Comment

Wow! How? Health

Tal Golesworthy lives with Marfan syndrome, which is characterized by long bones, flexible joints, eye problems, and, most threateningly, weakness at the root of the aorta. Over time, this major blood vessel becomes enlarged and, if left untreated, ruptures. Clinicians told Golesworthy he had few options, none of them attractive: wait and potentially experience a […]

Filed Under: Champions, Solvers Tagged With: Marfan syndrome, Rebel Health, Tal Golesworthy, Wow! How? Health

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Recent Comments

  • Carrie Kimmell on Case study: Trevor’s disease: “Hi Jill – currently Brandon is walking without a limp (he is almost 15 now). He was going to undergo…” Jun 5, 14:07
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