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 […]

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 […]

April #Nchat Recap

Thank you so much to everyone who participated this month!  This was the biggest #Nchat so far!  It’s amazing to see word spreading about this opportunity to chat real-time with people with narcolepsy all over the world.  I’m so honored to be a part of it! The theme for this month’s chat was triggers.  We […]

#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 […]

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 […]

Sleep Walk Dallas 2013 Recap

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During National Sleep Awareness Week, I posted on my Facebook page that I wanted people to share how they were celebrating and raising awareness.  My good friend, Gina, stepped up to the plate and wrote a guest post about participating in Sleep Walk Dallas.   Take it away, Gina! “Hi, I’m Gina Dennis and I’m a […]

Governor Jay Nixon Proclaims March 9th as Narcolepsy Awareness Day in Missouri

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Remember when I posted about requesting a proclamation of Narcolepsy Awareness Day?  I am so excited to announce that I received a very special certificate in the mail.  Governor Jay Nixon granted my request and has proclaimed March 9th as Narcolepsy Awareness Day in Missouri! Thank you so much to Governor Nixon for helping to […]