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Susannah Fox

I help people navigate health and technology.

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I AM ALS

Wow! How? For Love & Life

June 4, 2024 By Susannah Fox Leave a Comment

Movie poster: For Love and Life: No Ordinary Campaign. Amazon Prime May 28. Two people embrace, smiling, looking up.

This essay is part of my LinkedIn newsletter series: Wow! How? Health. Brian Wallach and Sandra Abrevaya brought their second daughter home on the same day that he received a devastating diagnosis: amyotrophic lateral sclerosis (ALS). Brian was told he had six months to live. Seven years later, Brian is still alive. He and Sandra […]

Filed Under: Champions, Networkers Tagged With: ALS, Amy Tenderich, Anthony Carbajal, Brian Wallach, Casey Quinlan, diabetesmine, Elizabeth Jameson, Gilles Frydman, I AM ALS, Jamie Heywood, Katie McCurdy, Maggie Whittum, Michael Graves, Pictal Health, Rebel Health, Sandra Abrevaya, Stephen Heywood, Synapticure, Wow! How? Health, Yoko Sen

Public Q&A: Human-centered design

January 9, 2023 By Susannah Fox 5 Comments

Questions marks painted on pavement

A community colleague recently tweeted an intriguing question: “Looking for a rec! Our grant team would like to have more knowledge & training around #HumanCenteredDesign for research & community engagement. Does anyone have #HCD trainings, modules, or programs they love?” She tagged a few people, including me, and a public conversation ensued. People shared resources, […]

Filed Under: positive patterns, public Q&A, research issues Tagged With: ARCHANGELS, Diana Forsythe, I AM ALS, IDEO, ImproveCareNow, Marina Nitze, Nick Sinai, Solve ME

Peer health playbooks

August 6, 2021 By Susannah Fox 18 Comments

Sunflowers with a bee

I’m collecting examples of peer health playbooks: the how-to guides that patients and caregivers write so that people following their path won’t stumble into the same pitfalls. If you know of one that is not listed below, please tell me about it in the comments. I AM ALS put together a step-by-step playbook of how […]

Filed Under: peer-to-peer health care Tagged With: ALS, Brain Tumor, Caregiver Action Network, Carmen Bombeke, Dana Lewis, food allergy, Genetic Alliance, I AM ALS, IBD, ImproveCareNow, Katherine Onk, Lianne Mandelbaum, Meghan Marsac, Melissa Hogan, mental health

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  • Carrie Kimmell on Case study: Trevor’s disease: “Hi Jill – currently Brandon is walking without a limp (he is almost 15 now). He was going to undergo…” Jun 5, 14:07
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