Luke RosenEnterprises of Great Pitch and MomentSusannah, Eleonora, and Sally11 min read·Feb 27, 2023----
Luke RosenAntisense Makes Senseand pioneering an N of 1 takes a whole community7 min read·Dec 22, 2022--2--2
Luke RosenThe Supreme Court’s Decision: Impact on the Rare Genetic Disease CommunityPart One8 min read·Jun 25, 2022----
Luke RosenSunrise 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…5 min read·Jun 17, 2021----
Luke RosenESES: 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…8 min read·Nov 12, 2020----
Luke RosenOur 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…4 min read·Oct 12, 2020----
Luke RosenPlaying 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…4 min read·Aug 18, 2020--1--1
Luke RosenProgressive Shopping for SuperheroesOriginally posted in October, 20163 min read·Aug 17, 2020----
Luke RosenThe 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…4 min read·Aug 17, 2020----
Luke RosenCost Analysis of Starting a Rare Disease FoundationAs our foundation thrives, more families with KIF1A find our community, and scientific discovery is taking flight, an important…5 min read·Aug 17, 2020----
