Raising Narcolepsy Awareness in Italy!

by julie on November 13, 2016

narcolepsy-not-alone-campaign-julie-flygare-project-sleep-speaker-italyOn Saturday Sept. 24, 2016, I stood outside the fancy lecture hall at the University of Bologna in Italy, fidgeting with nerves. I picked up my headset for the “live translation” system that would be my lifeline for the day.

Traveling to Italy to speak at the 20th Anniversary of AIN (Associazione Italiana Narcolettici e Ipersonni) was a huge honor. After being sick in Italy that week, I was finally feeling better! Now, I couldn’t wait to spend the day with the Italian narcolepsy community.

But I was also very nervous.

My presentation usually evokes laughter and tears.

Would emotions be lost in translation?

Rolling my suitcase of books and awareness materials into the auditorium, I almost ran directly into a full-size skeleton. “Ciao, Mr. Bones.” Here I was, to present myself as a “medical case-study” of sorts, but thankfully I was the living and breathing (and super vocal) version of a case study.

The stadium rows quickly filled with over 140 attendees, including people living with narcolepsy and hypersomnia, their supporters and narcolepsy doctors from Italy, France and the United States.

dr-emmanuel-mignot-stanford-narcolepsy-speaker-italy-julie-flyagreThe renowned Italian narcolepsy specialist, Dr. Giusppe Plazzi kicked off the meeting with opening remarks. Next, Dr. Emmanuel Mignot presented on his personal and professional journey to become a leading narcolepsy researcher and clinician. I’ve seen Dr. Mignot speak many times but I always love hearing his passion for the science. Then, Dr. Jean-Charles Schwartz from France spoke about his work to develop an antagonist for the Histamine H3 receptor as a possible future treatment for narcolepsy.

Next, it was my turn. I stepped to the front of the room and talked slower than usual, hoping this might help the translators keep up. My first jokes fell flat, but my next joke got a ton of laughs! Phew.

julie-flygare-narcolepsy-patient-advocate-runnerHalf way through my speech, I got choked up as I described:

“I decided to run the Boston Marathon without knowing anyone with narcolepsy with cataplexy who had ever run a marathon before. I was determined to raise research funds for…”

And then I looked up and caught eyes with Dr. Mignot, who sat in the third row listening intently.

All at once, it hit me: Never in my life, did I imagine I would say this part of my speech in front of the person who I had run for. Yet here we were, in Italy of all places, and it struck me as totally surreal that my hero was now someone I considered a friend.

I paused for a long moment, overwhelmed by emotions, and the whole room broke into applause for me! It was so funny, no one claps for you when you cry on stage in America. Usually everyone just sits in super-awkward silence. So, I started laughing and then I was able to continue to my speech.

narcolepsy-patient-speaker-julie-flygare-italy-jpg

Afterward, Silver and Icilio Ceretelli presented on their successful Lupo Alberto narcolepsy awareness cartoon campaign in Italy. To close the event, there was a panel  Q&A discussion. At the reception, I signed books and had the pleasure of meeting many of the Italians individually. We took lots of photos for the NARCOLEPSY: NOT ALONE campaign!

The biggest message I hoped to impart upon my Italian friends is one I hope to share with everyone: turn you passion into action. It’s easy to say there should be more narcolepsy awareness, but it’s another thing to take action. I encouraged my Italian friends to take small steps in their communities. I shared my belief that we need more than one voice, more than one approach, and more than one campaign, to truly transform narcolepsy awareness around the world.

A leader of the Italian Association, Massimo Zenti reported back to me afterward, “Your speech was very powerful. Members are organizing things now and so many good things are happening since the meeting!”

julie-flygare-narcolepsy-not-alone-presentation-italy-association-for-narcolepsy-hypersomnia

I’m forever grateful for the kindness bestowed upon me by the Italian narcolepsy community. Special thanks to Massimo Zenti and Icilio Ceretelli, the hard-working and generous leaders of AIN who invited me to Italy and and made me feel so welcome for my stay.

Every day, I am SO thankful for our amazing international narcolepsy community. We may speak different languages but our struggles and strengths, our pain and passion, are matters of heart, a universal language beyond words.

Event program front and back:
italian-narcolepsy-conference-program-front-and-back

italian-narcolepsy-conference-program-inside

More photos from my trip to Italy:

Also read: When Your Body Says Oh Hell No in Italy: Practicing Radical Self-Care On The Fly

{ 1 comment… read it below or add one }

Ciro November 13, 2016 at 6:38 am

So proud of you! I loved the Italian clap part.. They have a different appreciation for expressing feelings. I also loved all of your photos along your journey in Italy. Great message and blog!

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