The Supreme Court’s Decision: Impact on the Rare Genetic Disease CommunityPart OneJun 25, 2022Jun 25, 2022
Sunrise at Hinano with NeilIf you’ve spent real time in Venice, California, you know Hinano Cafe. If you haven’t spent time in Venice, you should go to Hinano, maybe…Jun 17, 2021Jun 17, 2021
ESES: The Battlefield of Nocturnal EpilepsySusannah does not wear pajamas to bed. She wears battle gear. After her bath is finished, teeth brushed, stories read and songs sang, it…Nov 12, 2020Nov 12, 2020
Our Disjoined Study of Disease and IdentityToday I read the author’s note preceding The Man Who Mistook His Wife for a Hat. I had read it before, in 2016, and the same copy (still…Oct 12, 2020Oct 12, 2020
Playing the Rare Disease CardParenting a kid with special needs requires a lot of writing. It seems like I’m constantly writing, which is ok because… well, I’m a…Aug 18, 20201Aug 18, 20201
The Shoulder FlopKeeping our kids safe is every parent’s number one job. Even as an adult I associate protection and safety with my childhood home and my…Aug 17, 2020Aug 17, 2020
