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Susannah Fox

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Archives for August 2025

Wow! How? Community

August 29, 2025 By Susannah Fox 1 Comment

A large group of people of all ages looking up at a camera

Vicki McCarrell had always dreamed of becoming a mother. When she gave birth at age thirty-eight to her son Sean, life seemed complete. Yes, he had the full facial paralysis typical of Moebius syndrome, but otherwise, he looked perfect to her. Indeed, at the hospital near her home in Van Nuys, California, she was given […]

Filed Under: Networkers, Seekers Tagged With: caregivers, Kathleen Bogart, Lori Thomas, Moebius Syndrome, peer-to-peer healthcare, Rare Disease, Rebel Health, Vicki McCarrell, 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

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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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