Bringing the Patient Voice to Disruptive Innovations Conference

by julie on September 13, 2014

IMG_0203This week, I flew to Boston to speak at the Disruptive Innovations conference. My 15-minute TED-style talk was titled “How a Patient Helped to Define a New Clinical Endpoint in Narcolepsy”.

Over the past few months, I researched and drafted my presentation and delivered two practice versions for my Toastmasters club. Knowing I was the “patient presenter” for this conference, I felt a responsibility to make a meaningful impact on behalf of all patients – to give a passionate plea for the importance of the patient voice. Also, flying across the country and taking days off work – I could NOT be forgettable!

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Arriving at the Copley Fairmont on Thursday, I quickly knew this would be my biggest audience yet – with over 300 attendees. I enjoyed the other presentations from innovators in the clinical trial space using technology, social media and gamification to improve health. The conference generously set up a table for me to sign books.  Many people approached to learn more about narcolepsy.

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The hour before my presentation, my emotions ranged from extreme nausea to calm confidence. My energy level varied from over-stimulated to the edges of a sleep attack.  I closed my eyes and envisioned myself on stage, hitting all my points perfectly.  Once on stage, I quickly hit my stride and felt at ease.

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I began my presentation with my symptom development, diagnosis and advocacy work. Then, I detailed narcolepsy’s journey into FDA’s Patient Focused Drug Development and how brain fog/cognitive issues were highlighted by patients as a major issue not currently being addressed by treatment options.

Lastly, I made a passionate pitch for pharma to partner closely with patients to develop meaningful patient-focused endpoints in clinical trials. I invited the attendees to be my co-explorers in finding better treatments for the future.

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Walking off-stage, people approached me to shake my hand, offering high praises and suggesting interesting collaborations. I was totally blown away – with people continuing to congratulate and thank me up until I left the hotel a few hours later.

Exiting the hotel, I floated on cloud 9. These streets of Boston hold many memories, nightmares and low points adjusting to narcolepsy. Returning “home” to add a wonderful new memory reminded me how far I’ve come as a person, a patient, an advocate and speaker.

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Thank you to Joe Kim for recommending me for this opportunity. Thank you to Valerie, Ciara and the lovely Conference Forum team who put together this amazing conference. Thank you for the opportunity to do what I love to do most – speak.

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Watch my full speech here:

Watch my interview on narcolepsy, FDA & Project Sleep:

{ 3 comments… read them below or add one }

Ann Sciabarrasi September 16, 2014 at 12:57 am

Thank you, Julie, for all you do to educate others about Narcolepsy.

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Valerie Bowling September 17, 2014 at 4:57 am

Congratulations Julie on an outstanding presentation. I am always honored to have the patient’s voice at Conference Forum events. Thank you for your excellent contribution to our audience of disruptive thinkers in drug development.

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Kathleen Devita October 12, 2014 at 12:26 pm

In addition to congratulations I have sincere gratitude for your ongoing effort to educate people.
I am returning to medication to control my Narcolepsy and reading to see if any changes occurred while I took a five year “sabbatical”. Without medication, while living alone, I slept the days away, gained more weight and added to my own depression.
It seemed like nothing changed. Just like in the past, even with my explanation of having Narcolepsy, the request of filling my prescriptions still brings about looks of quizzical confusion. It seems now-a-days I have to hold onto my own prescription(s) and call a week later to see if the medications are in and the drugstore won’t even call me. I have to call them.
And so as usual, although the pharmacy may think I am crazy, I repeat myself to all the pharmacy help to hopefully avoid that accusational “look”. As the saying goes I am always still feeling like “I am alone again”.
So of course your NOT ALONE theme really got my attention. Now I hear those words running around in my head. Maybe there is still hope for the full acknowledgement of this often non visible but often disabling condition. Luckily, there is a powerful dedicated lady, named Judy raising awareness. Thank you so much Judy Flygare. You are really appreciated.

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