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Susannah Fox

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personal science

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

Transforming research participation

October 18, 2023 By Susannah Fox Leave a Comment

Close up picture of a dandelion

Below is a letter I wrote in response to Tania Simoncelli’s article, “From Bedside to Bench and Back,” (Issues in Science and Technology, Summer 2023). Read all the responses here. Biomedical research has blind spots that can be reduced, as Tania Simoncelli writes, by “centering the largest stakeholders in medicine—the patients.” By focusing on rare […]

Filed Under: research issues, Solvers Tagged With: #wearenotwaiting, artificial intelligence, cancer, Chan Zuckerberg Initiative, diabetes, personal science, Rare Disease, rare diseases, Rebel Health, Tania Simoncelli

Too legit to quit

April 18, 2022 By Susannah Fox 17 Comments

Sunflowers with a bee

Sara Riggare, PhD, an expert in patient-led research and personal science, tweeted this animated GIF depicting the common process in starting personal science, which is based on Anne Wright’s work: Andrea Downing was among those who replied, writing: “My feedback: We’ve been saying for years what you outline here. The question is: how do we […]

Filed Under: health data, key people, peer-to-peer health care, research issues Tagged With: Andrea Downing, Anne Wright, Dana Lewis, Gary Wolf, Long Covid, personal science, Quantified Self, Sara Riggare, Unrest

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