Last week I had some of the most powerful experiences in both my personal and professional lives, so here are some pictures and a bit about it!
I have wanted to attend The Ehlers-Danlos Society’s annual International Global Learning Conference for as long as they’ve been having one. Fortunately, this year it came to me right here in Philadelphia – and not only did I get the chance to attend: I also got to lead workshops with the many kids (“Junior Zebras”) in attendance about how to turn their pain into art, and to perform two original songs as the closing act in the annual gala (including “Paperweight,” which is the first time I’ve ever sung it live).
First, a word about the Society: I have never learned more about my own condition in such a short span of time. The number of global experts compiled across countless medical specialties was just staggering. When I have the official video from my live performance I’m going to post that along with a donation link, but you can also visit The Ehlers-Danlos Society‘s website right now, subscribe, and make a donation now if you’re able. The work they are doing to advance both research and advocacy for me and the millions who share my condition is second to none, and I hope you’ll consider helping them to help me and so many others like me.
I got to spend time with many dear friends at this event, some of whom are fellow advocates whom I’ve communicated with for years but never met in person before. I want to give a special shoutout to Christina Doherty, who is one of the kindest, smartest, most empathetic and resilient human beings I have ever had the privilege to know. If you want to know more about EDS, look Christina up on Instagram or YouTube – she is an incredible “expert by experience,” and an honor to call my friend.
I also got to hang with Dr. Sarah Cohen Solomon, an EDS pediatrician who has been a dear friend ever since she was in med school right here in Philly. It was such a pleasure to connect with her again, and I highly recommend checking out her own advocacy articles and podcasts.
That’s all for now, but I can’t wait to share the video of my performance as soon as I have it. Thanks so much for reading, and more soon!
