Posts Tagged ‘Narcolepsy’
Official NARCOLEPSY: NOT ALONE T-shirts!
The official NARCOLEPSY: NOT ALONE t-shirts are here! Raise awareness about narcolepsy while also supporting a good cause. Proceeds support Project Sleep, my new non-profit raising awareness about sleep health and sleep disorders. Purchase by Jan. 26, 2014. View/Order T-Shirts – Available in three styles: men’s/unisex, women’s fit and youth sizes – ONLY for sale…
Read MoreNARCOLEPSY: NOT ALONE Reaches 50 States!
On New Year’s Eve, NARCOLEPSY: NOT ALONE reaches an exciting milestone – collecting photos from all 50 U.S. States! Thank you to Jamie and her mother for sending this photo from MONTANA today. Next time you meet someone who thinks narcolepsy is just a joke – you can tell them a little story about the 840…
Read MoreIntroducing the Jack & Julie Narcolepsy Scholarship
Today, I’m thrilled to unveil the Jack & Julie Narcolepsy Scholarship, the first-ever scholarship supporting students with narcolepsy while also raising awareness about narcolepsy in high school and collegiate settings. Beginning in 2014, one scholarship of $1,000 will be awarded to a high school senior who plans to attend a four-year university and exemplifies courage and…
Read MoreNARCOLEPSY: NOT ALONE Worldwide Update & Inviting My Hero, Ellen DeGeneres to Join Us!
Five months ago today, I launched the NARCOLEPSY: NOT ALONE campaign. I’m so excited to share this worldwide video update: Creating this video brought tears to my eyes – we had to stop filming momentarily so I could regain my composure. Thank you for standing tall and proud with me – helping to prove that…
Read MoreOver 140 People at Narcolepsy UK Conference 2013 Say NARCOLEPSY: NOT ALONE
Guest post by Narcolepsy UK: Narcolepsy UK held its latest conference in Watford, just outside London, on Saturday, Sept. 14, 2013 and it was a great success. Our speakers were Dr Cathy Hill, a specialist in sleep disorders in children, the Medical Detection Dogs charity, fiction author Sue Moorcroft and her research into creating a…
Read MoreRandom Remmie Joins NARCOLEPSY: NOT ALONE Campaign Guest Post by Julie Barfuss
Meet “Random Remmie” – she’s had narcolepsy for as long as she can remember. She hates making her bed, she has a lot of pajamas, slippers, and a blue blanket. She’s really random. CLICK IMAGES TO VIEW SLIDESHOW: About the Artist: Julie Barfuss has lived in Utah her whole life. She doesn’t remember not being…
Read MoreThe Path to Narcolepsy Diagnosis: Julie Flygare Narcolepsy Awareness Video #21
I’m thrilled to release my 21st narcolepsy awareness video today, describing the path to a narcolepsy diagnosis. Watch below or on YouTube. Thank you so much for watching my video. Come back soon for more! A big thank you to Alex Withrow for his expert video production skils, you make me look good. 🙂 Watch…
Read MoreNarcolepsy Infographic: What Is Narcolepsy?
I’m so excited to release my narcolepsy infographic! This is the FIRST infographic dedicated to raising awareness about narcolepsy. Please share! Unveiling Narcolepsy Infographic Video: Narcolepsy Infographic: DOWNLOAD FILE Thank you to my amazing graphic designer, Anthony Nesossis. Thank you to Alex Withrow for his pro video production! Read about the making of the infographic here.…
Read MoreWhat To Say & NOT Say to Narcolepsy Patients
While speaking at SLEEP 2013, a doctor asked a great question: “Are there things I should or shouldn’t say to my narcolepsy patients?” The question caught me off-guard. It was so… thoughtful! Our panel provided some tips. Please add your suggestions in the comments below. What doctors should Say: Set reasonable expectations of working together long…
Read MoreResults of the Burden of Narcolepsy Disease (BOND) Study: Guest Post by Dr. Mark Patterson
REM Runner’s Note: I asked my good friend and fellow narcolepsy advocate, Dr. Mark Patterson, to share some important information from the APSS SLEEP 2013 meeting. Thank you so much, Dr. Patterson, for this thoughtful well-written post. Dr. Mark Patterson’s Guest Post: I had the good fortune of attending the 27th Annual Meeting of…
Read More