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Susannah Fox

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Networkers

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

Discovery Diaries with Damon Davis

May 16, 2024 By Susannah Fox Leave a Comment

Rebel Health: A field guide to the patient-led revolution in medical care

Damon Davis has a new podcast, Discovery Diaries, and I was honored be among his first guests. We got into a wide range of topics: the origins of my interest in patient-led innovation; artificial intelligence and how patients, survivors, and caregivers should be included in the design of AI tools; our time working together at […]

Filed Under: Champions, Networkers, Seekers, Solvers Tagged With: AA, Ben West, Black Panther Party, Bryan Mazlish, caregivers, Damon Davis, Dana Lewis, diabetes, E-Patient Dave, Fda, food allergy, Hhs, Hugo Campos, Jane Sarasohn-Kahn, peer-to-peer healthcare, Regina Holliday

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

Wow! How? Peer Warmline

May 9, 2024 By Susannah Fox Leave a Comment

Wow! How? Health

This essay is part of my LinkedIn newsletter series: Wow! How? Health. About two million people in North Carolina experience a mental health or substance use disorder crisis each year. Historically, about half did not receive treatment because of cost, leading to repercussions for families, communities, and individuals. A new Peer Warmline, staffed by counselors […]

Filed Under: Champions, Networkers, peer-to-peer health care, policy issues, Solvers Tagged With: Kody Kinsley, mental health, North Carolina, peer counseling, peer-to-peer healthcare, Promise Resource Network, Wow! How? Health

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

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  • Susannah Fox on Rare Disease in the NYT: “Captivated is such a good description of how I felt, too. I read the essay once through quickly, then a…” Apr 25, 11:12
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