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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

  • Lisa Suennen on Wow! How? Community: “That is a beautiful story. Kids always have the best answers” Aug 29, 11:31
  • Susannah Fox on Lessons learned about hospice care: “Zoe, thank you for the unvarnished comment! We need to go into end of life with our eyes open in…” Aug 5, 14:20
  • Zoe on Lessons learned about hospice care: “I despise home hospice and the entire industry can kiss my ass. I was duped into caring for my dying…” Aug 5, 03:45

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