Project Sleep
Real-Life Narcolepsy Superhero Reveals Powers to Captain America’s Jeremy Renner
Recently, ‘Captain America: Civil War’ star Jeremy Renner said that he wanted to be “Captain Narcolepsy… so he could nap whenever he wanted” on Live! with Kelly and Michael. Afterward, many people with narcolepsy and their supporters took to social media to respond. One particular response caught my attention – written by Wendy Ellsworth, a 34-year-old registered nurse living…
Read MoreMy best hallucination yet! A Visit from the Phantom Foot Massager
During lunchtime today, I went to my nap room at work, cuddled up into my lovely blanket from Ireland and quickly fell asleep. Next thing, I awoke to the most AMAZING foot massage!! Oh la la. My feet were sore from intense yoga classes over the weekend, so I really appreciated the free yummy foot massage from…. um…. my phantom foot…
Read MoreEver Met Someone with Narcolepsy? Or Feeling ALONE with Narcolepsy?
I recently created my first Flipagram, highlighting the NARCOLEPSY: NOT ALONE campaign! I hope you enjoy and please share with friends and family. Watch here: Thanks for watching my first Flipagram! NARCOLEPSY: NOT ALONE has over 1,200 photos of people with narcolepsy and supporters from all 50 U.S. States and 48 countries around the world. Of course, this campaign is not…
Read MoreNARCOLEPSY: NOT ALONE takes over the French Alps!
Say HELLO to Ben who shares a monumental message of hope and narcolepsy awareness from 5,800 feet in the air. Thanks to Ben, NARCOLEPSY: NOT ALONE is now inscribed on a scenic snow-topped mountaintop in the French Alps, along a popular chair-lift route for every single ski resort visitor to see until the next snow…
Read MoreA proud moment – publishing a chapter in narcolepsy clinical guide
A few nights ago, I returned home from work exhausted and found a mysterious heavy package on my doorstep. Inside was a brand new copy of Narcolepsy: A Clinical Guide (2nd ed.), edited by Dr. Meeta Goswami, Dr. Michael Thorpy and S.R. Pandi-Perumal. As a patient advocate, it was a HUGE honor to contribute the chapter…
Read MoreHappy Rare Disease Day 2016!
Today, February 29 is Rare Disease Day! With 350 million people around the world living with a rare disease, HUG someone with a RARE DISEASE today. For Rare Disease Day 2016, I was SO honored to contribute to two great articles for Mashable’s Social Good program. Author, Katie Dupere eloquently describes: “For those living with rare…
Read MoreSleep in to speak out! Join Project Sleep’s SLEEP IN 2016 today.
On March 11-13, Project Sleep is taking to our beds for SLEEP IN 2016 to make PEACE with SLEEP during National Sleep Awareness Week! Challenge yourself to stay in bed for 12-48 hours over the weekend and join an international movement to raise awareness about sleep health and sleep disorders. Register today (it’s free): www.crowdrise.com/sleepin2016 With…
Read MorePowerful Perspective: Becoming a Doctor with Narcolepsy
Don’t miss this highly captivating post Becoming a Doctor with Narcolepsy, now published on Project Sleep’s website. The author is a third year medical student diagnosed with narcolepsy a year and a half ago, after suffering symptoms since age 15. In this moving reflection, the medical student contemplates a tough decision: whether or not to disclose her diagnosis…
Read MorePodcast: A conversation about narcolepsy, Homer Simpson, memoir writing and marathon running.
Check out this fun podcast! I was so honored to be featured on “Just Talking Podcast” with Christopher Snider. I met Chris at MedX, he is the creator of mydiabetessecret.com and an incredible role model and ePatient leader who is shining a bright light on the power of the patient voice. It’s funny when someone you look…
Read More2015 Reflections & Dreams for 2016 – Homer Simpson, Koalas and Marathons, Oh My!
Scariest Moment of 2015: I gave 12 presentations in 2015, but by far the most intimidating was my 5-minute ignite talk at Stanford Medicine X. My legs trembled stepping on stage in front of this prestigious group of healthcare innovators. I’d prepared for months, but still totally blanked mid-speech, making for a dramatic pause…….. But I did it and I’m…
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