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Susannah Fox

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Champions

Patient Input on Clinical Trials

October 16, 2025 By Susannah Fox 2 Comments

A pipette hovers above a dozen test tubes

According to the World Health Organization, over one million clinical trials are conducted annually across the world. In 2024, the U.S. hosted approximately 20% of all trials, followed by China and India. Imagine all those thousands of patients traveling to clinics, submitting their samples, taking their treatments, and hoping that they – or those who follow […]

Filed Under: Champions, participatory research, policy issues, research issues Tagged With: caregivers, Clinical Trials, Council of Medical Specialty Societies, Innovation Network, Marion Campbell, Patient-Led Research Collaborative, Rebel Health, Stuart Nicholls, Tony Fantana, World Health Organization, Wow! How? Health

Wow! How? Every Cure

September 15, 2025 By Susannah Fox Leave a Comment

New York Times Sunday Business story on Feb. 5, 2017: Doctor, Cure Thyself

David Fajgenbaum was in medical school when his body began shutting down. A former college quarterback, he lay in bed, nearly helpless, as a priest read him his last rites. Then a doctor pitched a Hail Mary pass by administering seven different types of chemotherapy, hoping to blast Castleman disease out of Fajgenbaum’s body. It […]

Filed Under: Champions, Networkers, Seekers, Solvers Tagged With: Castleman disease, David Fajgenbaum, Every Cure, Rare Disease, Rebel Health, Wow! How? Health

Jill Dopf Viles, DIY scientist

August 15, 2025 By Susannah Fox Leave a Comment

Book cover: Manufacturing My Miracle: One woman's quest to create her personalized gene therapy, by Jill Dopf Viles. Bloomsbury

Jill Dopf Viles suspected a killer was hiding in her family’s genetic code. Symptoms popped up among her siblings, her father, her uncle, her grandmother, but, despite 15 annual visits to the Mayo Clinic, no clinician suggested anything more specific than muscular dystrophy. Viles studied genetics in college and spent hours in the library, reading […]

Filed Under: Champions, Networkers, Seekers, Solvers Tagged With: books I love, Jill Dopf Viles, muscular dystrophy, Rare Disease, rare diseases, Rebel Health, Wow! How? Health

Wow! How? Psychedelic Outlaws

June 27, 2025 By Susannah Fox Leave a Comment

Part of the Psychedelic Outlaws book cover. Glass dishes containing tablets, mushrooms, and capsules.

Imagine the nerves behind one of your eyes suddenly bursting into flames of pain, relentlessly burning for hours. The pain recedes, then roars back, day after day. You try to describe what is happening inside your head to your family, your clinicians, even yourself, but words fall short. It is the worst pain a human […]

Filed Under: Champions, Networkers, patient networks, peer-to-peer health care, Seekers, Solvers Tagged With: books I love, Clusterbusters, David Fajgenbaum, Global Genes, Joanna Kempner, Patient-Led Research Collaborative, psychedelics, Rebel Health, Wow! How? Health

Wow! How? Cancer Treatment Innovation

May 30, 2025 By Susannah Fox Leave a Comment

A pipette hovers above a dozen test tubes

This post is the latest in my series of “Wow! How? Health” stories, also shared on LinkedIn if you want to follow the conversation on that platform.  When Michael Katz was diagnosed with multiple myeloma, he was fortunate to connect with someone who had recently completed treatment, the “just-in-time someone-like-me” that could guide him. He vowed to do the […]

Filed Under: Champions, Networkers, Seekers Tagged With: ACOR, cancer, Clinical Trials, International Myeloma Foundation, Mayo Clinic, Michael Katz, multiple myeloma, Rebel Health, Vincent Rajkumar, Wow! How? Health

Jean Nidetch, Rebel Health leader

May 9, 2025 By Susannah Fox 2 Comments

A blonde woman in a black shirt looks to her left.

Jean Nidetch and six friends decided to try to lose weight together, meeting at her home to encourage and support each other in their quest. Their success drew more friends and in May, 1963, Nidetch launched a company based on the idea that peer support is key to weight control. Over 400 people showed up […]

Filed Under: Champions, Networkers, Seekers, Solvers Tagged With: Jean Nidetch, Rebel Health, Weight Watchers, Wow! How? Health

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Recent Comments

  • Susannah Fox on Patient Input on Clinical Trials: “Great question, thank you! My impression is that our best bet is to make it appeal to study sponsors as…” Oct 17, 10:26
  • Dave deBronkart on Patient Input on Clinical Trials: “I don’t have anything to add but I have a suggestion for the problem that trialists don’t *know* about the…” Oct 16, 14:01
  • Rufus on Hack needed: Tiny pills, trembling hands: “How about using a small piece of store bought bread? Slices of bread can be “smooshed,” and a small piece…” Oct 5, 23:48

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