Narcolepsy Network Conference 2013

by julie on October 30, 2013

IMG_4213On Oct. 18 – 20, I attended the Annual Narcolepsy Network Conference in Atlanta, GA, where I led four sessions along with selling and signing books. It was a whirlwind weekend – catching up with old friends and meeting new friends.

The conference had a fantastic line-up of narcolepsy researchers and clinicians. These doctors were thrilled to support the NARCOLEPSY: NOT ALONE campaign!

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Dr. Michael Thorpy
Montefiore Medical Center
Bronx, NY

Dr. Thomas Scammell
Harvard Medical School
Boston, MA

Dr. David Rye
Emory University
Atlanta, GA

Dr. Todd Swick
Neurology and Sleep 
Medicine Consultants
Houston, TX

My boyfriend, Alex joined me for the second year in a row – he co-led a session with me, took photos and helped at my book table. His support, patience and enthusiasm means the world to me.  

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I really enjoyed my four presentations this year, including:

  • Screen shot 2013-10-31 at 11.04.13 AMWide Awake and Dreaming: A Memoir of Narcolepsy” – From a Dream to Reality
    Description: 
    Author Julie Flygare will share challenges, successes and tips from her writing and publishing process. She will read select passages from her memoir and answer questions from readers and aspiring writers.
  • Narcolepsy Advocacy Update on the FDA Patient Focused Initiative (co-leaders Julie Flygare and Mark Patterson)
    Description: Learn about the FDA’s Patient Focused Drug Development Initiative (PFDDI) and narcolepsy’s inclusion in the program. Julie and Mark will recap the Sept 24, 2013 FDA Narcolepsy Meeting, provide guidance for writing comments to FDA by Nov. 24, 2013 and explain where we go from here.  
  • Communicating Narcolepsy in Everyday Life 
    Description: Together, we will explore strategies for communicating effectively about narcolepsy in everyday life with family, friends, doctors, co-workers, teachers, peers and strangers alike. These invaluable tools will empower you to speak proudly about your experience with narcolepsy.
  • Narcolepsy and Your Social Life (for Young Adults)
    Description: As a young adult, narcolepsy can have a huge impact on your friendships and dating life. We will talk through issues like finding supportive friends, breaking plans when we aren’t feeling well, medication, drinking/not drinking, disclosing narcolepsy on dates, etc. This session offers support and tips for building positive supportive relationships with friends and significant others. 

Thank you for attending my sessions, visiting my book table and posing for NARCOLEPSY: NOT ALONE photos. I was overwhelmed by your love, kindness and gratitude and I will cherish these memories forever. For those unable to join us, we missed you and hope to see you next year in Denver, Colorado!  

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View additional conference photos in the NARCOLEPSY: NOT ALONE gallery.

(Photography by Alex Withrow)

{ 6 comments… read them below or add one }

Katie Callison November 1, 2013 at 12:23 pm

Were any of your presentations taped by chance? You look so confident and happy. Job well done!

Reply

julie November 1, 2013 at 4:38 pm

Katie,
Unfortunately, my sessions were not taped. I wish! Hopefully someday soon.
Thank you for your support,
Julie

Reply

Cindy November 2, 2013 at 11:59 am

Julie, it’s great that your significant other is so supportive! I know that feeling firsthand. You guys make such a cute couple…I want an invite to your wedding, when it eventually gets here. No pressure! C

Reply

Ian Buda November 8, 2013 at 4:22 pm

Julie,
This conference looks alot of like fun and seems very informative; I’m thankful that I’m not alone. I hope to make it to next year’s conference in Denver; perhaps I’ll find someone to nap with. Thanks for all you do and for raising awareness for us!

Big “I”

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Alex Withrow November 10, 2013 at 8:00 pm

You’re such an inspiration. I was so happy to be a part of this weekend!

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Scott August 8, 2014 at 4:59 pm

After looking at the photos from Atlanta I noticed that there was no teens at the conference. Our daughter is 13 and was diagnosed with narcolepsy and all that comes with it when she was 11. Is there a conference that caters to young people ?

Reply

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