November 2011 - Present
Gilenya Guide
Details: I travel around the country speaking to groups of patients and sharing my experience with Gilenya. This has been the most rewarding experience of my life. Knowing that I am reaching out and connecting with other MS patients and possibly making a difference is the most satisfying feeling ever.
September 14, 2012
Interview with Craig Lipset of Pfizer
Second Annual Disruptive Innovations to Advance Clinical Trials
Details: I had the honor of being interviewed by Craig Lipset regarding my clinical trial blog and my ePatient Advocacy.
November 28, 2012
Health 2.0 Conference in London
Disruptive Innovations Conference
Details: I shared my experience as a clinical trial patient and gave suggestions for how to improve a clinical trial from the patient perspective in order to increase recruitment and retention. This was my first ever interview via Skype and it was awesome! I could see the audience from a laptop they had, and they watched me projected on a huge screen. We did a Q&A with the attendees after my speech and I got to Skype with them each personally as they approached the computer to ask their questions. A lot of great ideas were batted around.
My story of being a hypochondriac, an MS patient, and a guinea pig. NOTE: After 16 years on Fingolimod, I'm starting my self-designed study to taper off the drug while avoiding the now well-documented "rebound relapse" phenomenon. I'll be writing about my journey on SubStack and you can find it here: https://farewellfingolimod.substack.com/
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