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Susannah Fox

I help people navigate health and technology.

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Seekers

Wow! How? In-your-face Expertise

September 5, 2024 By Susannah Fox 2 Comments

Wow! How? Health

This post is part of my LinkedIn series: Wow! How? Health. I welcome comments on either platform. Thirty-three years ago today, on September 5, 1991, activists unfurled a giant, inflatable condom over a U.S. Senator’s house. Don’t believe me? Watch a 30-second news clip or a 5-minute documentary about the action. It was a splashy way […]

Filed Under: Networkers, peer-to-peer health care, Seekers, Solvers Tagged With: ACT-UP, chronic pain, cluster headache, HIV/AIDS, Joanna Kempner, Long Covid, National Breast Cancer Coalition, Peter Staley, psychedelics, Steven Epstein, TAG, Wow! How? Health

Wow! How? Patient Memoirs

August 29, 2024 By Susannah Fox 2 Comments

Four books: The Long Haul; Chasing My Cure; AfterShock; Wide Awake and Dreaming

In his book, The Long Haul, Ryan Prior writes about his advocacy on behalf of people with ME/CFS: Though I had negotiated a fragile truce with the disease, my deeper fear was that it would eventually fully disable me, just as it had done for so many of my friends…At the edge of my every thought […]

Filed Under: Champions, key people, Networkers, peer-to-peer health care, Seekers, Solvers Tagged With: cancer, David Fajgenbaum, Jessie Gruman, Julie Flygare, Long Covid, Lucy Grealy, ME/CFS, narcolepsy, rare diseases, Ryan Prior, Wow! How? Health

Wow! How? Obesity Treatment

June 28, 2024 By Susannah Fox Leave a Comment

Cartoon of 4 people exercising, holding a laptop, or holding a book

This post is part of my LinkedIn series: Wow! How? Health. Four in ten U.S. adults have obesity, according to the National Center for Health Statistics. That includes 9% of U.S. adults with severe obesity, which is defined as having a body mass index over 40. Shame and stigma compound their health problems. “You wear […]

Filed Under: Champions, health data, Networkers, peer-to-peer health care, Seekers, Solvers Tagged With: diet, Elina Onitskansky, Ilant Health, obesity, Rebel Health, Wow! How? Health

Wow! How? Learning Health Networks

June 13, 2024 By Susannah Fox 1 Comment

Wow! How? Health

In 2007, pediatric gastroenterologists began tracking and sharing best practices as they cared for kids with Crohn’s disease and ulcerative colitis. Their “all teach, all learn” philosophy invited patients and families to participate as key members of the care innovation teams. The results have been astonishing: 82% of patients in the ImproveCareNow network of 100+ […]

Filed Under: Networkers, Seekers, Solvers Tagged With: ImproveCareNow, learning health system, Rebel Health, ulcerative colitis, Wow! How? Health

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

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Recent Comments

  • Susannah Fox on Rare Disease in the NYT: “Liz, thank you for sharing this comment! I’m sorry for your loss and the experience you went through. Thank you…” Jul 4, 12:05
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