Working with Narcolepsy: Part III – When Caring Comes Naturally

After my boss and leadership got even more involved – the nap room situation improved quickly. (Read Part I and Part II of this story.) Nap Bench on the Move: The nap bench was moved again, this time to a small room on the second floor along a nice secluded quiet hallway. The door’s sign was changed to Wellness Room.…

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Raising Narcolepsy Awareness at Nova Southeastern University

Grand Rounds is the important educational tradition of doctors and healthcare professionals getting together to learn about evolving areas which may be outside of their core practice. However, patients are rarely invited to participate, so sharing my narcolepsy journey at Nova Southeastern University (NSU)’s Grand Rounds on May 8, 2015 was a HUGE honor. This is why, just 24 hours…

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Speaking at the Hypersomnia Conference 2015

I’m thrilled to be a featured speaker at the Hypersomnia Foundation’s Annual Conference on Fri. July 17 – Sat. July 18, 2015 at Emory Conference Center Hotel in Atlanta, GA. Join us: http://bit.ly/2015HSFConference. I will present two sessions, one sharing my inspiring journey from hiding my narcolepsy to becoming a vocal advocate and a second session on communicating about sleepiness.…

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Watch Now: How a Patient Helped Define A New Clinical Endpoint with FDA

How did I catch the “Advocacy Bug”? Why is the patient voice important? Watch my TED-style talk on the power of narcolepsy advocates working directly with FDA to build a brighter future. I gave this speech to over 300 clinical trial development experts in the pharmaceutical industry at the Disruptive Innovations Conference in Boston, MA on Sept.…

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Speaking at Current Concepts in Sleep Conference

Over Labor Day weekend, I traveled to Tampa Bay, Florida to speak at the Current Concepts in Sleep Conference. Seeing tears in people’s eyes, I knew I’d opened their hearts to the REAL narcolepsy. It was an honor to present my journey to sleep doctors and technicians. Throughout the conference, Project Sleep was well-represented! Sleep…

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Raising Narcolepsy Awareness at KYSS Conference

On October 12, I had the honor of speaking at Kentucky Sleep Society’s 15th Annual Sleep Medicine Conference in Louisville, KY. The Society’s membership includes sleep doctors and sleep technicians. I gave my favorite presentation – my personal story of narcolepsy from beginning symptoms all the way through the NARCOLEPSY: NOT ALONE campaign. Highlighting the…

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Hello from SLEEP 2013!

This week, I attended and spoke at the APSS SLEEP Meeting, a.k.a. “the Superbowl of Sleep.” Thousands of sleep researchers and clinicians from all over the world attended this meeting on June 1-5 in Baltimore, MD. On Wednesday, I participated on a pediatric narcolepsy panel hosted by Dr. Judith Owens with pediatric specialists, other patients…

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Presenting the Patient Perspective at Social Media for Pharma Conference

On May 15, 2013, I had the honor of presenting “The Patient Perspective” at the Social Media for Pharma Conference in Princeton, NJ. The conference theme intrigued me, with the many FDA regulations surrounding how pharma companies can interact with patients. I learned a lot and met some awesome innovative thinkers at the conference.  I spoke…

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