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Susannah Fox

I help people navigate health and technology.

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Burt Minow

Rare but not alone

March 11, 2019 By Susannah Fox 1 Comment

Between the flags by Nicolas Alejandro on Flickr

Ashley Eakin, a filmmaker, is being brave and showing her real self online. She does it on behalf of the kids who share her rare condition so they can see themselves, in her image — a beautiful example of how the internet can be a bridge to hope and inclusion. Watch: When she mentions in […]

Filed Under: beauty and wonder, peer-to-peer health care Tagged With: Ashley Eakin, Burt Minow, Moebius Syndrome, peer-to-peer healthcare, Rare Disease, rare diseases

Find your people

January 24, 2015 By Susannah Fox 9 Comments

Look Beyond Face Value: Moebius Syndrome Awareness Day

Longtime readers will recognize this story, but I’m posting it again here–and on Medium–to honor Moebius Syndrome Awareness Day: When Burt Minow was born in 1922, his disability — partial hearing loss and complete facial paralysis—was immediately apparent. His mouth was frozen in a sort of frown, and he could not suck on a nipple to get […]

Filed Under: e-patient stories, peer-to-peer health care Tagged With: Burt Minow, Moebius Syndrome, Nell Minow, peer-to-peer healthcare

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popular posts

  • Crazy, crazy, LongCovid, obvious
  • Sunflowers turn to each other for help
  • Hack needed: Tiny pills, trembling hands
  • Case study: One in a million diagnosis

Recent Comments

  • Susannah Fox on Crazy, crazy, LongCovid, obvious: “Maneesh, thank you! I want to highlight one of the great points you make: Someone should be documenting the real-time…” Jan 26, 10:57
  • Susannah Fox on Crazy, crazy, LongCovid, obvious: “Thank you, Carolyn! My hope is that because clinician leaders like NIH Director Francis Collins are praising the patient-led researchers’…” Jan 26, 10:23
  • Susannah Fox on Crazy, crazy, LongCovid, obvious: ““I can tell you the names of all the women who reached out to respond.” That resonates. My own experience…” Jan 25, 13:11

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