Advocacy
2018 Exciting Update: Advancing Novel Treatment Options for Narcolepsy
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…
Read MoreToday: 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 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 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 MoreHow to Become a Narcolepsy Advocate? Apply Today for Rising Voices of Narcolepsy – Deadline Approaching
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…
Read MoreCourage is Contagious: Mental Health Provider Speaks Up About Narcolepsy
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…
Read MoreFollow My Marathon Training as a Person with Narcolepsy
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!…
Read MoreWoman with Narcolepsy Versus Colossal Marathon
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…
Read MoreNarcolepsy Advocate in Neurology Now Magazine
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…
Read MoreWhat is my secret? Am I a “typical” person with narcolepsy?
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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