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The 2019 CSRF Cushing’s Patient Journey Summit: Defining the “New Normal”

Leslie Edwin

Everything about this event was special.  The agenda was created by a steering committee of 36 patients, and the conversations about the agenda formed the basis for a 140-question survey that went out to membership via e-mail between January and the beginning of February 2020.  After our last national conference in 2017, there were observations that many of us would like more of a “beyond the 101” style program for everything that comes after the initial treatment, and that’s how the name and concept were born.

As a patient, I was excited to attend this event.  I am still a bit starstruck to think about the presenters we had: my neurosurgeon and hero, Dr. Nelson Oyesiku, my other favorite health team member, Neuroendocrinologist Dr. Adriana Ioachimescu, plus 15 other experts in their fields who had prepared programming based directly on patient feedback.  We held our meeting over multiple days on a warm weekend in early October in Atlanta at the Emory Conference Center, just a few blocks up the road from Emory University Hospital, home to a Pituitary Center of Excellence and also where I’ve received all of my care associated with Cushing’s (neurosurgery, neuroendocrinology, neuropsychology, radiation oncologist, ENT, nephrologist, reproductive endocrinologist, etc.).  Having it in my hometown was a best possible scenario for me and I was proud to have it “at” Emory.  If I tried to remember all the volunteers who gave hours of their time to pull this event off so smoothly, I would fail terribly, but I think you understand!  Thank you again to everyone, so much.  Special thanks to Marie Conley who added special touches that made the event better.   

The meeting is well documented with videos, slides, and handouts, so rather than type out a lengthy article about it, I will share some awesome photos from the event here and then point you to or the QR code and you can check it all out.  The patient story videos are on our YouTube channel at, or scan the QR code.

Patient Journey Summit Meeting Page
Patient Journey Summit YouTube Channel

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