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 […]

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 […]

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 […]

March Narcolepsy Twitter Chat, #Nchat, Saturday, March 2nd, 2pm EST

The next Twitter narcolepsy chat, aka #Nchat, is scheduled for Saturday, March 2nd at 2pm Eastern Standard Time. (The time was pushed up a few hours in hopes of accommodating our international participants a little better.) This month’s topic is “Support.” Questions will be tailored specifically for PWN and for those supporting PWN. To learn […]

Two Days Until the Virtual Run/Walk for Narcolepsy Research!

Virtual Run/Walk for Narcolepsy Research July 14th Inspired by Makenna’s story, which you can read about here, I thought it was time that I did something besides donate a little money to the cause.  I want this cause to be bigger.  I want people caring as much about the daily struggles that we go through as […]

Virtual Run/Walk for Narcolepsy Research July 14th

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Inspired by Makenna’s story, which you can read about here, I thought it was time that I did something besides donate a little money to the cause.  I want this cause to be bigger.  I want people caring as much about the daily struggles that we go through as they do about every other illness.  […]

Wednesday Words of Wisdom for the Weary: Symptom Variation

Dear Strides Against Narcolepsy, My friend told me that she has narcolepsy, but I’ve never seen her fall asleep. I thought narcolepsy means you fall asleep all the time. Was my friend misdiagnosed? -Anonymous Dear Anonymous, I must admit, when I first read your e-mail, I immediately went on the defensive. It’s hard for people […]

Wednesday Words of Wisdom for the Weary: Support

With only a fraction of the population – about 0.04% – being diagnosed with narcolepsy, it can seem difficult to find support. While I have a loving husband who provides a source of strength for me, it is sometimes necessary for me to find other people fighting the same fight. To find others who can […]

Willpower….Good, but not enough

Do you know the difference between people with narcolepsy and people without narcolepsy? I’ll give you a hint. Even when people with narcolepsy have the will to stay awake and accomplish a task, it is sometimes physically impossible. It is one aspect of the disorder that people without narcolepsy have a difficult time understanding. “Can’t […]

When Silence is not Golden : A Few Words About Advocacy

The following has been adopted from a speech I gave just two days following my diagnosis.  I am posting it here because I think the message is extremely important. Nobel prize winning American author William Faulkner said, “Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and […]