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Susannah Fox

I help people navigate health and technology.

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Moebius Syndrome

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

Public Q&A: Alternatives to Facebook and YouTube?

December 4, 2014 By Susannah Fox 5 Comments

Kathleen Bogart, PhD, studies how people communicate across disability. I met her through the work I’ve done with the Moebius Syndrome Foundation (and I wrote about her research in 2012: Facial Paralysis, Not Personality Paralysis). She emailed me with a very intriguing question, so I’m sharing it here for discussion: Moebius Syndrome is a highly […]

Filed Under: public Q&A Tagged With: Facebook, Moebius Syndrome, Viddler, Vimeo, Youtube

Hacking home health care

February 10, 2014 By Susannah Fox 56 Comments

King Arthur large baker's peel

We need to fix the “solved problems” crisis in home health care. Let me explain. At the start of Health Foo* in December, everyone introduced themselves in 6 words or less. Row by row, person by person, 100+ people talked in turn. In the back row, nearly the last to speak, Laura Baldwin stood and […]

Filed Under: end of life, key people, peer-to-peer health care Tagged With: #InventHealth, Alzheimers, caregivers, Health Foo, home health care hacks, Invent Health, Moebius Syndrome

On the internet, the expression of your spirit has nothing to do with the expression on your face.

July 19, 2012 By Susannah Fox Leave a Comment

– the line I added to my speech on the train up to Philadelphia last Saturday. I wanted to convey to the people attending the 2012 Moebius Syndrome Conference that I admire them and see them as pioneers of peer-to-peer health care. My full post is on e-patients.net: Health Care Hackers

Filed Under: patient networks Tagged With: Moebius Syndrome, peer-to-peer healthcare

“There are 3 types of people…”

July 16, 2012 By Susannah Fox Leave a Comment

“People who think that people with disabilities can’t do anything, that we’re fragile and in need. People who think we are inspirational and think we can fly to the moon if we wanted to. People who treat us like everyone else, who know that we’ll ask for help if we need it but otherwise we’re […]

Filed Under: research issues Tagged With: disability, Moebius Syndrome

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Recent Comments

  • Dave deBronkart on Hack needed: Tiny pills, trembling hands: “A later article on Choi’s project: https://www.cbc.ca/radio/asithappens/as-it-happens-the-monday-edition-1.5868846/how-tiktok-users-designed-a-better-pill-bottle-for-people-with-parkinson-s-1.5868848” Jan 17, 19:04
  • Susannah Fox on Hack needed: Tiny pills, trembling hands: “Update: Peer-to-peer connections, open-source design, and new manufacturing capabilities may have yielded a solution. Here’s the story: TikTok Users Rally…” Jan 11, 06:39
  • Susannah Fox on Lessons learned about hospice care: “Erica, thank you for fighting for your grandmother and I’m sorry for your loss. So many themes and vignettes in…” Jan 4, 08:25

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