I grew up rich in cousins. I spent holidays with my first cousins and lived, starting at age 11, in the same town with second cousins (the children of my mother’s first cousin) AND a first cousin twice removed (my grandmother’s first cousin – each generation that separates us is the “removed” part). Don’t worry, […]
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Peer-to-peer advice for caregivers
Longtime readers of my blog know that I’m a caregiver. I helped care for my grandparents and my father until the end of their lives and I’m currently caring for an “uncle” (he is my cousin’s widower, but it’s easier to just tell people I’m his niece). I’m also obsessed with amplifying the lessons we […]
Patient-led research is a key element of pandemic response
On August 12, the Council of Medical Specialty Societies hosted the fifth webinar in their series focused on COVID-19 and clinical registries. If you missed it — or want to watch it again — here’s the video: Here, also, are the panelists’ slides and a collection of tweets posted in advance of and during the […]
Zooming into each other’s homes
My friend and community colleague Margie Morris wrote a wonderful article for a clinical neuroscience journal that, with her permission, I am excerpting for a series of posts (if you missed it, here’s the first one). She writes: To meaningfully connect, we will need to do more than show up online. Now, more than ever, […]
Advancing clinical registries to support pandemic treatment and response
The biomedical research model has a blind spot. People living with a condition or disease are traditionally seen as passive sources of data, not active participants in the research. We as a society miss out on promising avenues of inquiry. It’s time to widen our lens. On August 12, I’ll moderate a discussion about how […]
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