#DysConf 2018: Raising dysautonomia awareness in Nashville

NASHVILLE. MUSIC CITY. LAND OF HOT CHICKEN, BACHELORETTE PARTIES, AND TAYLOR SWIFT. (She does own like 10% of the city at this point, right? At least that’s what I’m lead to believe.) And also home to this year’s Dysautonomia International patient, caregiver and physician conference! For the first time ever, we ventured away from our usual… Continue reading #DysConf 2018: Raising dysautonomia awareness in Nashville

#DysConf 2017: recap, highlights and how I managed four days of going, going, going

As many members of the Dysautonomia International Medical Advisory Board, Board of Directors and Patient Advisory Board that we could corral at lunch

Given the fact that my favorite thing in the world is just sitting and talking or sleeping, it doesn’t make much sense that the highlight of my year is a four day conference that I spend the majority of each day on my feet, running around, making things happen. I *do* spend plenty of time… Continue reading #DysConf 2017: recap, highlights and how I managed four days of going, going, going

#DysConf 2017: recap, Lobby Day in a Lobby Daze

Historically, #DysConf Lobby Days have been on the hottest days of the year. This year, at with a high of 91 degrees, it was actually the coolest Lobby Day we’d had so far… and let’s just say I FELT every single one of those degrees. We arrived downtown later than we’d planned and booked it… Continue reading #DysConf 2017: recap, Lobby Day in a Lobby Daze

Why I’m very suddenly excited about health policy legislation

This is Shira Strongin. She runs the blog and community The Sick Chicks which is pretty great and you should head over there sometime soon if you aren’t already familiar. We met this year at the Dysautonomia International Conference and became prettttty good friends and the fact that we weren’t best friends until now is… Continue reading Why I’m very suddenly excited about health policy legislation