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Susannah Fox

I help people navigate health and technology.

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Unrest

January 8, 2018 By Susannah Fox 1 Comment

Jennifer Brea, director of the film Unrest, lies in bed with EEG leads on her head

The film “Unrest” will debut on Independent Lens this week (check your local listings — in the DC area it will air on Jan. 12 at 10:30pm on WETA). I couldn’t wait and bought my own digital copy on Amazon. Let me just say: It’s no surprise that it’s on the short list for an Academy […]

Filed Under: e-patient stories, key people, patient networks, peer-to-peer health care, policy issues Tagged With: chronic fatigue syndrome, Jennifer Brea, Marfan syndrome, ME/CFS, myalgic encephalomyelitis, peer-to-peer healthcare, Rare Disease, rare diseases

When it comes to health, your community may be your superpower

December 8, 2017 By Susannah Fox 20 Comments

Peer to peer health advice: your community may really be your superpower

“You may not know it, but you could have a superpower.” That’s the opening line of the video we released today on DocMikeEvans’s YouTube channel: Mike Heinrich and his amazing team at Reframe Health produced the storyboards and audio effects. This project was supported by the Robert Wood Johnson Foundation Global Ideas Fund at CAF America. […]

Filed Under: peer-to-peer health care Tagged With: Erin Moore, Mike Evans, Reframe Health, Robert Wood Johnson Foundation, Wendy Sue Swanson

Waiting with open arms

December 4, 2017 By Susannah Fox Leave a Comment

Wave Group Photo by Michael Cannon on Flickr

I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes. Emily Kramer-Golinkoff, in response to “A field guide to The Diagnosis Difference” (2013): My advice to a person or parent of a child newly diagnosed with Cystic Fibrosis would be: “I can only imagine […]

Filed Under: featured commenters, peer-to-peer health care Tagged With: cystic fibrosis, Emily Kramer-Golinkoff, Stanford Medicine X

Tapping into my superpower – you

November 30, 2017 By Susannah Fox 12 Comments

Peer to peer health advice: your community may really be your superpower

Friends, I have a personal request. On Friday, December 8, Reframe Health Lab will release a video about peer health advice. It’s my best shot yet at inspiring people to go online not only for information, but also to connect with each other. It was an honor to work with Mike Evans, MD, and Wendy […]

Filed Under: peer-to-peer health care Tagged With: Erin Moore, Mike Evans, peer-to-peer healthcare, Robert Wood Johnson Foundation, Wendy Sue Swanson

This Thanksgiving, engage with grace

November 20, 2017 By Susannah Fox 2 Comments

The following is a repost from 2012, one of the first examples of what would become my “featured commenters” series: I want to continue the Engage with Grace blog rally by highlighting my favorite comment thread about it, from a 2010 post on e-patients.net. For me, this is what blogging is about — providing a […]

Filed Under: end of life, featured commenters Tagged With: Brian Ahier, Bryan Vartabedian, Carol Torgan, Engage with Grace, Eve Harris, Regina Holliday, Ted Eytan, Wendy Sue Swanson

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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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