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Susannah Fox

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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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