NARCOLEPSY: NOT ALONE

NARCOLEPSY: NOT ALONE in Vegas, baby!

by julie on November 8, 2015

Claire, Trinity & Julie - celebrating after the show!

 “We dance for laughter, we dance for tears, we dance for madness, we dance for fears, we dance for hopes, we dance for screams, we are the dancers, we create the dreams.” Last night, we truly celebrated NARCOLEPSY: NOT ALONE with big smiles and pride in Las Vegas! Accompanied by award-winning neurologist and Ph.D. narcolepsy specialist […]

{ 1 comment }

Narcolepsy ePatient Medicine X Julie Flygare Video

I’m thrilled to share my 5-minute Ignite! Talk from Stanford Medicine X 2015. Please share with friends and family to raise narcolepsy awareness (https://youtu.be/MXTd8xd_f8s). In this video, I describe my journey with narcolepsy from people laughing in my face to living proudly and creating the NARCOLEPSY: NOT ALONE campaign. I emphasize how feeling “misunderstood and alone” with […]

{ 3 comments }

Narcolepsy Narcolepsy Narcolepsy Julie Flygare MedX speech

REM Runner’s Note: On Sept. 24, 2015, I had the huge honor of stepping on the MedX main stage at Stanford Medical School to give an ePatient Ignite Talk. This is (more-or-less) what I said:  ************ Diagnosed with narcolepsy at age 24, I was excited to tell my friends and family. Finally! I had legitimate medical terms […]

{ 2 comments }

Screen shot 2015-10-11 at 10.10.45 PM

REM Runner’s note: Recently, Elaine of Chica Siesta joined the NARCOLEPSY: NOT ALONE campaign. After reading her beautiful blog, I asked her to share in a guest post here. Please enjoy Elaine’s powerful and fresh voice. Read more at chicasiesta.wordpress.com.  Syncopation – by Elaine Golden Recently, my friends and I went swing dancing at a jazz club […]

{ 0 comments }

homer simpson narcolepsy not alone

When the Simpsons premieres tonight at 8pm ET/PT,  Homer will get “narcolepsy”. I’m thrilled to report that Executive Producer, Al Jean tweeted me: “The episode was modified somewhat after I read the extremely compelling article you wrote. Not sure you will be 100% happy…” Thank you, Al Jean and the Simpsons  for thoughtfully reading and modifying […]

{ 4 comments }

suffering the silence social media campaign narcolepsy not alone julie flygare patient x

Living in Silence: Eight years ago today, on Sept. 18, 2007, I was diagnosed with narcolepsy with cataplexy, a serious chronic neurological disorder of the sleep/wake cycle. I told friends and family right away. Finally, I had scientific words to describe my mysterious symptoms. But I hated people’s reactions. Some acted as if I’d said […]

{ 11 comments }

Narcolepsy: Not Alone

As a 29-year-old, female journalist and photographer, I am accustomed to the words people use to define me; “Fearless”, “gutsy”, “courageous” are just a few. But, as a woman living with severe narcolepsy, I often struggle to reconcile these one-dimensional characterizations with my own sense of self. That disconnect was recently underscored when I announced […]

{ 7 comments }

julie flygare narcolepsy hyersomnia conference 2015

Recently, I traveled to Atlanta to speak at the Hypersomnia Conference 2015. The conference featured a great variety of support groups and fantastic presentations by medical leaders, educational experts, patient advocates and a disabilities attorney. Uniquely, the conference also included hypersomnia, narcolepsy and KLS speakers and attendees, so we could share and learn from each […]

{ 1 comment }

YOU CAN AND YOU WILL (Marathon Part II)

by julie on June 12, 2015

Screen shot 2015-06-05 at 7.30.41 PM

As I crossed the start line of the San Diego Rock n Roll Marathon, runners started passing me. I laughed when a pack of Elvis(s) passed me. Typical. “Slow and steady. No one to beat. Nothing to prove,” I told myself. My shirt was drenched with sweat within 3 miles. Soon my hands raisined and […]

{ 2 comments }

Screen shot 2015-06-05 at 7.33.13 PM

The week of the marathon, I forgot I was running a marathon. “Have you booked your hotel yet?” my co-worker, Betsy asked me on Wednesday. “Uh, no, but I will…” My mind was preoccupied with other efforts, the Jack & Julie Narcolepsy Scholarship and Sleep Walk Dallas. So, I was last minute about everything – […]

{ 1 comment }