Will the FDA Hear YOUR Story? Take Surveys, Join Webinars, and More!

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The FDA’s Narcolepsy Patient Focused Meeting  on September 24, 2013 is quickly approaching.  This is an important opportunity for people with narcolepsy and other narcolepsy advocates to provide insight on the impact of narcolepsy on daily life.  This meeting could very well shape the direction of future treatments. Julie Flygare has partnered with Unite Narcolepsy to […]

2nd Annual Strides Against Narcolepsy Virtual Run/Walk Raises Over $500 for Wake Up Narcolepsy

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On the weekend of July 12-14th, people with narcolepsy and their supporters around the world participated in a virtual run/walk to raise money to support Wake Up Narcolepsy’s mission in funding research to find a cure.  With donations still trickling in as of yesterday, August 11th, the total amount raised was about $580.  Way to go, everyone!! […]

July #Nchat Recap

July 6th, 2013, marked the 11th Twitter narcolepsy chat, #nchat.  It is hard to believe what started as a little idea to help people with narcolepsy communicate with other people with narcolepsy has become such a wonderful tool for finding answers, advice, and support.  This month, questions came from the suggestions participants wrote in the survey that […]

When a Heroine Needs a Hero (Or Two): A Little Sister’s Perspective on Narcolepsy and Cataplexy

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This is one of my favorite photos of the older of my younger sisters and me.  (She’s on the left; I am on the right.)  We went on a trip to Daytona Beach, FL years ago.  2006 I think?  We had a blast as we do when we’re hanging out together.  I love all three of […]

2nd Annual Strides Against Narcolepsy Virtual Run/Walk July 12-14

I am pleased to announce the 2nd Annual Strides Against Narcolepsy Virtual Run/Walk to raise funds for narcolepsy research will be held July 12-14.  I’m even more pleased to announce that I’m partnering with Wake Up Narcolepsy, an organization whose mission is to support narcolepsy awareness and research to find a cure.  They have created […]

Research Presented at SLEEP 2013 Demonstrates Challenges Faced by People with Narcolepsy

Earlier this week, the  SLEEP conference, the Annual Meeting of the Associated Professional Sleep Societies, was held in Baltimore.  I’ve been eating up Tweets sent by those attending the sessions!  I was also forwarded a press release regarding a series of studies supported by Jazz Pharmaceuticals designed to show patient impact as well as comorbidities, costs, and healthcare […]

#HAWMC Day 5: Aspirations

  Source:lovemorefearless.tumblr.com Today’s Health Activist Writer’s Month Challenge is “If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations are no longer an issue. What is your biggest goal that is now possible? I’m still working on finding my voice and my own niche in the world of advocacy.  […]

HAWMC Day 2: Introduction to Narcolepsy

If you’ve ever seen Rat Race, you’ve seen how narcolepsy is mostly portrayed in movies. Here is one of the scenes in the movie where the character is overcome with the urge to sleep: If only narcolepsy were that simple… or that funny… Narcolepsy is much more complicated than falling asleep randomly or falling asleep […]

Health Activist Writer’s Month Challenge Day 1: Getting Started

Source: kristanlynn.com via WEGO Health on Pinterest   I’m really excited to join the Health Activist Writer’s Month Challenge organized by WEGO Health. This is the first time I’ve participated in such challenge. The goal is to post every single day – a loft goal for this girl! I’m not sure I’ll be able to […]

So Over Weight & Cleva (Narcolepsy Poem) by Shelly Bell

Shelly and I follow each other on Twitter.  When she shared this poem with me, I knew I had to share it with the rest of the community. http://www.youtube.com/watch?v=IRn5HnfyTVc Thank you, Shelly, for writing this powerful message that so many of us can relate to in one way or another.   “Sometimes ya gotta get alright […]