Posts Tagged ‘Narcolepsy’
A Narco’s Tale: A Poem by Maureen Caden
I was diagnosed in 2003 and like many of us went through many years with unanswered fears. I knew I was not lazy as some days became rather hazy. I would will myself to stay awake I didn’t even have time to bake a cake. For sleep time would come This thing had me under…
Read MoreMiss USA Contestant has Narcolepsy – Vote for Miss Louisiana Kristen Girault
Proud to be a person with narcolepsy today! Miss USA contestant – Miss Louisiana, Kristen Girault suffers from a mild case of narcolepsy. She spoke candidly about the challenges of narcolepsy with Inside Edition here. “My teachers used to throw erasers at me in class or complain that I was always falling asleep,” describes Kristen. “I promised that…
Read MoreHello from SLEEP 2013!
This week, I attended and spoke at the APSS SLEEP Meeting, a.k.a. “the Superbowl of Sleep.” Thousands of sleep researchers and clinicians from all over the world attended this meeting on June 1-5 in Baltimore, MD. On Wednesday, I participated on a pediatric narcolepsy panel hosted by Dr. Judith Owens with pediatric specialists, other patients…
Read MoreMy Twisted Fairytale: A Poem by Shelby Stein
I feel like a princess locked in a tower. My Narcolepsy is my dragon guard. My weight loss is the lava moat that makes me cower more. My evil witch is merely my medicine, At first we didn’t see the harm, For it had a magic disguise to seem so beautiful. My poison apple of my…
Read MoreNarcolepsy & Exercise: Narcolepsy Awareness Video #17
As a person with narcolepsy, a sleep disorder or chronic illness, what’s your take on exercise? Too tired? Crucial to your health? Improve your symptoms? My latest video explores my experience as an athlete with narcolepsy and offers tips for successfully incorporating exercise into your life. Come back for more videos soon! Thank you…
Read MoreTips for Students with Narcolepsy Video
I’m thrilled to release my 14th narcolepsy awareness video! This video offers tips for students with narcolepsy based on my personal experience and various community members’ input. Everyone is different – please share tips in the comments below. Check back soon for more videos! Thank you to Alex Withrow for his expert video production. Watch…
Read MoreNarcolepsy selected for FDA Patient Focused Drug Development Initiative (PFDDI)
I’m thrilled to announce that NARCOLEPSY has been selected for FDA’s Patient-focused Drug Development Initiative (PFDDI). Narcolepsy has been selected as one of the initial 12 disease areas for individual evaluation to be addressed in FY 2013 – FY 2015. We did it! I testified in person and led the campaign for online comments.…
Read MoreWatch Video: TV Narcolepsy Interview with Julie Flygare on Forward Motion with Karen Allyn
Recently, I was a guest on Forward Motion with Karen Allyn (MCM Channel 21). Re-cap and fun photos here. The video is now online! Watch here or on YouTube. Thank you for checking out my interview! Big thanks to Karen Allyn and the Forward Motion team.
Read MoreDream Big Concert Benefitting Narcolepsy Awareness: Guest Blog Post by Kevin Gonzales
“I wanted to ensure her that I love her and would support her through anything.” -Kevin Gonzales REM Runner’s Note: This is a story of love. I was thrilled to learn about the Dream Big Concert and even more thrilled to hear Kevin and Megan’s journey toward creating this event. I asked Kevin to write a…
Read MoreNarcolepsy in the Classroom – Web Broadcast Event
Families of children and teens with narcolepsy are invited to attend this special event on Saturday February 9th from 2-4 p.m. (EST) at Children’s National Medical Center in Washington D.C. LIVE INTERNATIONAL BROADCAST: You are invited to participate in a live internet broadcast as experts speak on “Narcolepsy in the Classroom” on Saturday Feb 9, 2013 from…
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