Ready for Awareness? World Narcolepsy Day 2020 is one month away!

By julie | August 23, 2020 |

Less than one month until World Narcolepsy Day on Sept. 22, 2020, and I cannot wait for this second annual day dedicated to raising narcolepsy awareness on a global scale. World Narcolepsy Day 2020 is co-led by 26 non-profit patient advocacy organizations on six continents around the world. See all the orgs listed here. Last…

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Share! Narcolepsy with Cataplexy PSA Video with Ode to Joy Movie

By julie | August 19, 2019 |

Friends: I’m SO beyond thrilled to share the news with you today that Project Sleep proudly partnered with IFC Films and Ode to Joy Director, Jason Winer, to create a PSA to raise awareness about narcolepsy with cataplexy. Please watch and share with friends!   Teamwork makes the dream work I am so grateful to Jason…

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Join Us in Austin for the Central Texas Narcolepsy Forum

By julie | May 17, 2019 |

Friends, I’m thrilled to share the news that Project Sleep is co-hosting a unique one-day event in Austin, TX with the Austin Narcolepsy Support Group on Saturday, June 15, 2019 from 10:00 a.m. – 3:00 p.m. Please join us for the Central Texas Narcolepsy Forum – see the full details and register today!  Why am I…

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The Stories We Share Today Become the World We Live In Tomorrow

By julie | January 17, 2019 |

I’m thrilled to share Project Sleep’s new narcolepsy awareness video series. These videos feature five of our Rising Voices of Narcolepsy speakers sharing their personal stories, interwoven with key narcolepsy facts. I hope you will be as moved as I am by these brave stories and share them today: WATCH NOW SHARE ON FACEBOOK TWEET IT   Why…

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Narcolepsy Meets Design Thinking – Join Me for Unique Boston Event

By julie | August 26, 2018 |

Please join Project Sleep in Boston for “Innovations in Narcolepsy Awareness” on Saturday, Sept. 15, from 10 a.m. – 4 p.m. at the NonProfit Center (89 South Street, Boston, MA – one block from South Station). This one-day meeting and interactive workshop will empower and educate advocates while also advancing novel approaches to educating the public…

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What is my secret? Am I a “typical” person with narcolepsy?

By julie | August 13, 2016 |

I received the following comment on my recent blog post and wanted to respond here. ************ Dear N. Leptic, Thank you for taking an interest in learning more about my experience with narcolepsy. First of all, I am so sorry to hear about your challenging experience with narcolepsy. It sounds like you are facing some very real and significant…

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YOUR STORY MATTERS: Introducing Rising Voices of Narcolepsy ℠

By julie | August 3, 2016 |

This month, Project Sleep announced Rising Voices of Narcolepsy ℠, a leadership training program to help people with narcolepsy effectively share their stories through public speaking and writing with local communities, healthcare providers, news outlets, blogs and beyond. On a personal note, this is a huge dream come true for me. It’s such a joy to use my seven years of experience…

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Speaking in Italy!

By julie | June 26, 2016 |

This September 23-24, I will travel to Italy to speak at a very special 20th anniversary party of A.I.N. (Associazione Italiana Narcolettici e Ipersonni) in Bologna. Other featured speakers will include Dr. Emmanuel Mignot from Stanford (USA) and Prof. Jean-Charles Schwartz from Paris (France). While there will be live translation, I’m hoping to brush up…

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What does cataplexy look like? GIF by Eleanor of www.Falling-Asleep.com

By julie | April 3, 2016 |

Check out this amazing depiction of terrifying symptom of ‪#‎narcolepsy‬ called CATAPLEXY – created by Eleanor of Falling Asleep: A Narcolepsy Guidebook. Please note: this character is fully conscious and awake yet crumbling to the ground paralyzed. It’s terrifying.   For more infographics, blogs and resources: www.falling-asleep.com Commentary by Julie Flygare: I was 22 when my knees fight buckled while…

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