News/Media
Today: Please Ask Your Representative to Co-Sign Narcolepsy Research Letter
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…
Read MoreJumping Into a New Chapter of My Journey
Hi friends! I’m so beyond excited to share that as of February 12, 2018, I made a huge career change and took on a new role as President & Chief Executive Officer (CEO) of Project Sleep! Read the full announcement here. Wait, what’s the difference? Some people have said they thought I was already serving in this…
Read MoreHave You Told Your Members of Congress About Narcolepsy?
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…
Read MoreUp/Lifted Podcast Featuring Narcolepsy
I’m honored to be the first female guest on the Up/Lifted Podcast this week! Up/Lifted is a cool new podcast hosted by Arin Gragossian about “personal history, pivotal moments, & honest stories. And sometimes lifting massive amounts of weight.” On this show, Arin and I did NOT lift weights, but talked living with invisible chronic health conditions, narcolepsy, Project…
Read MoreWatch Now: Narcolepsy Keynote Presentation with Julie Flygare
I’m so excited to share my Health:Further keynote presentation video. I delivered this speech to over 1,000 healthcare professionals in Nashville, TN last year. My speeches are rarely online – so be sure to check this out! Watch video: I shared here how mad nervous I was for this speech, but I managed to pull it…
Read MoreCNN Article on My Marathon with Narcolepsy
I’m thrilled to share CNN Health’s feature article Runner: Having narcolepsy is harder than a marathon. This Sleep Awareness Week, please share with your friends and family to raise critical narcolepsy awareness. Working with CNN on this piece was particularly meaningful. I first spoke with the reporter, Maria, in January two months before the race after she’d read…
Read MoreLifting Weights and Each Others’ Spirits While Living with Narcolepsy and Cataplexy
One of the best parts of the Griffith Park Trial Marathon took place about 10 days BEFORE the race. Arriving home from work one night around 8:00 p.m., I was totally drained and wanted to call it a night, but I had to go running. Ugh. I’d run over 270 miles in four months, and only had…
Read MoreWeekend Plans? Sleep In to Raise Awareness!
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…
Read MoreI did it!! Conquering Griffith Park Trail Marathon with Narcolepsy
On Saturday, March 4, 2017, I took on the Griffith Park Trail Marathon as a person with narcolepsy to raise funds for Project Sleep’s Jack & Julie Narcolepsy Scholarship. As I said here, I was nervous and uncertain. On the morning of the race, I woke up lethargic and stiff, but I showed up. I had…
Read More24 hours til my Mountain Marathon with Narcolepsy… No Clue How This Story Ends
Four months ago, I had the “crazy idea” of signing up for the Griffith Park Trail Marathon. When I signed up, I actually thought I had five months to prepare, when I only had four… What can I say, math isn’t my strong suit. Maybe I should’ve quit then, but if you know me, I’m pretty determined/stubborn.…
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