Advocacy

Friends, I’m so honored to be a speaker on an upcoming webinar, “Translating the Patient Story into Action” taking place on Wednesday, August 22nd at 2:00 p.m. ET.  Please register today to save your spot! This event is hosted by the Society for Participatory Medicine, one of my very favorite organizations ever. The Society for Participatory Medicine […]

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One of my biggest takeaways from the APSS 2018 SLEEP Meeting last month was the great amount of drug development underway for narcolepsy! Below is a list of some of the emerging treatments “abuzz” at #SLEEP2018. These are at various stages in development, and it’s hard to predict how quickly each will advance to (hopefully) gain […]

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Hi friends! I’m so excited to share an amazing opportunity to support critical narcolepsy research THIS WEEK! My Representative, Congressman Schiff of California, is preparing to send a letter to NIH inquiring on the current size, scope, and direction of the narcolepsy portfolio (See Letters). This letter will encourage NIH to support the full spectrum of narcolepsy […]

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I have a confession. I realized recently, “OMG, I haven’t told my Members of Congress that I have narcolepsy!!” While I consider myself a vocal advocate, I haven’t informed my legislators that I CARE about narcolepsy and sleep research and they should too. So, I’m excited to share that I will be going to Capitol Hill […]

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Weekend Plans? Sleep In to Raise Awareness!

by julie on March 10, 2017

After running Griffith Park Trail Marathon last weekend, I couldn’t be any more excited for Sleep In 2017 (#SleepIn2017) this weekend! Please join me by staying in bed for 12-48 hours to raise awareness about sleep health and sleep disorders. Yep, you heard me right… The challenge is to REST and SLEEP. Register here and invite your friends and family to […]

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We all have a story to tell. Let’s get busy telling yours! I’m so excited to share the news that Project Sleep is now accepting applications for the Rising Voices of Narcolepsy leadership training program. However, the application deadline is quickly approaching in 9 days on February 24th, 2017 at 5:00pm PST, so please view summer 2017 […]

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Meet Sarah, a mental health professional in Chicago who was diagnosed with narcolepsy in 2015 after facing years of mysterious symptoms and misdiagnoses. In this informative iBehaviorCoach Radio podcast hosted by Matt Lawson, Sarah debunks myths and raises important awareness about narcolepsy and the invisible nature of sleepiness. I eagerly tuned in to hear about Sarah’s experience […]

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Two weeks ago, I set out for my longest steepest training run yet to prepare for Griffith Park Trail Marathon on March 4th. I documented my 17.4 mile marathon training experience via Instagram Story and it was so fun, I had to share here: I hope you enjoyed coming along my training run with me! […]

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When I hit “publish” on this post, I will be sharing something I’ve been scared to tell you. So here it goes… On March 4th, I will take on the greatest athletic challenge of my life – the Griffith Park Trail Marathon. Will you support me? This beastly race is 26.2 miles while also climbing 3,669 feet […]

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Narcolepsy Advocate in Neurology Now Magazine

by julie on October 12, 2016

Hot off the presses! I’m proud to be featured in Neurology Now’s article, Self Diagnose Successfully, on becoming an empowered and informed patient. I love Neurology Now magazine but narcolepsy isn’t included much, so I am thrilled to help raise some narcolepsy awareness with this neurology audience. Also, it’s super cool that my MedX friend, Matthew Might is […]

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