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Susannah Fox

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Long Covid

Wow! How? Patient-Led Research Scorecards

March 27, 2025 By Susannah Fox Leave a Comment

In Dark Times Shine Your Light Brighter

Most stakeholders in biomedical innovation – scientists, clinicians, patients, caregivers, funders, regulators – recognize each other as allies in the fight against disease. But they often lack shared principles and practices to guide the work they do together. For example, a research organization may say they value patient input, but they do not recognize their […]

Filed Under: Champions, Networkers, patient networks, research issues, Solvers Tagged With: Council of Medical Specialty Societies, COVID19, Emily Sirotich, Gary Wolf, Gina Assaf, Hannah Davis, Helen Burstin, Long Covid, Patient-Led Research Collaborative, PCORI, Quantified Self, Rebel Health, Wow! How? Health

The Black Panther Party’s Health Innovations

February 20, 2025 By Susannah Fox Leave a Comment

Cover of the book Body and Soul by Alondra Nelson. Black and white photo of seated people wearing white coats and taking a blood sample from the finger of a child.

Here is the 40th in my series of “Wow! How? Health” stories, also shared on LinkedIn if you want to follow the conversation on that platform. In 1971, the Black Panther Party diagnosed the federal government’s failure to study sickle cell anemia, a genetic disease believed at the time to be found predominately in people […]

Filed Under: Champions, Networkers, Seekers, Solvers Tagged With: Alfredo Morabia, Alondra Nelson, Bill Wallace, Black Panther Party, Long Covid, Mary T. Bassett, personal science, Quantified Self, Rare Disease, Rebel Health, sickle cell anemia, Wow! How? Health

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

Public Q&A: My 5 favorite books on how to defend yourself against the U.S. health care system

May 24, 2024 By Susannah Fox 2 Comments

4 books: A Beginners' Guide to the End; Josie's Story; AfterShock; The Long Covid Survival Guide

Shepherd.com invites authors to write heartfelt reviews of other people’s books on a topic related to their own work. The site is a rabbit hole that you will LOVE exploring, so go ahead and click on, for example, “The best books about America’s toughest time: life in the dirty thirties” or “The best children’s books […]

Filed Under: key people, public Q&A Tagged With: BJ Miller, caregivers, end of life, Fiona Lowenstein, Jessie Gruman, Long Covid, Muriel Gillick, Shoshana Berger, Sorrel King

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

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