Requesting a Proclamation of Narcolepsy Awareness Day

Oh my goodness, I feel so giddy right now.  I sent in a request for the Governor of Missouri, Jay Nixon, to proclaim March 9th as Narcolepsy Awareness Day!  I’m a bit shaky with excitement at the moment. It all started when Sarah D. at Narcolepsy Network contacted me on Facebook to tell me about […]

December #Nchat Recap

The December #Nchat covered various topics from raising awareness to managing symptoms during the holiday season. Some common themes I noticed: There are so many ways people work to raise awareness. It makes me wonder how much more we could get done if we worked together on initiatives as a group instead of one person […]

Raising Funds and Awareness Through Celebrating: Cat’s Birthday Benefit for Wake Up Narcolepsy

Cat Thoma isn’t having a typical birthday party this year.  Diagnosed with narcolepsy in 2012 after suffering with symptoms since childhood, she decided to ask her friends and family to help fund research for a cure instead of asking for traditional gifts.  She contacted Wake Up Narcolepsy, a not-for-profit organization “dedicated to supporting narcolepsy awareness […]

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 […]

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 […]

Solidarity in Rarity: Rare Disease Day

Today is a special day.  Not only is it February 29th, which comes once every four years, but it is also Rare Disease Day.  You can watch a video about this important day here. Throughout the day, I’ve been thinking about the slogan, “Rare but strong together.”  I’ve been thinking about the word “solidarity,” which […]