Narcolepsy
NARCOLEPSY: NOT ALONE Runs Great Ocean Road Marathon in Australia
Just 9 days until my marathon and I’m super inspired by Louise, Jacob and their crew of 20 people who sported NARCOLEPSY: NOT ALONE for the Great Ocean Road Marathon in Australia last weekend. 12 runners wore the shirts (including 3 young doctors who have promised to spread the word amongst their peers!), and 8…
Read MoreRaising Narcolepsy Awareness at Nova Southeastern University
Grand Rounds is the important educational tradition of doctors and healthcare professionals getting together to learn about evolving areas which may be outside of their core practice. However, patients are rarely invited to participate, so sharing my narcolepsy journey at Nova Southeastern University (NSU)’s Grand Rounds on May 8, 2015 was a HUGE honor. This is why, just 24 hours…
Read MoreDALLAS, will you SLEEP WALK with me?
I’m sooo excited to announce that I’ll be visiting Texas for SLEEP WALK DALLAS FORT WORTH on June 13, 2015. I can’t wait to raise sleep awareness with my DFW friends, plus I hear there’s face painting, prizes and a bounce house, so join us! IMPORTANT: Purchase t-shirt by Sunday, May 24th REGISTRATION: $5 in advance or at…
Read MoreNarcolepsy Podcasts on SleepHub
During my recent visit to Australia, I got to meet Dr. David Cunnington, a sleep doctor in Melbourne. Last fall, I’d “met” Dr. Cunnington virtually when we were both interviewed on the Daily Edition TV program on narcolepsy. He’s one of those unique sleep doctors who is both knowledgeable about narcolepsy and truly CARES about his…
Read MoreVisiting Australia for the Narcolepsy Support Australia Conference
“What could I say that they don’t already know?” This question haunted me in the months, weeks and days leading up to Narcolepsy Support Australia Conference. Over a year ago, when NSG Australia’s leader-extraordinaire, Melissa asked me to be a keynote speaker at their inaugural patient conference, I said “Yes!!!” right away. No question, I wouldn’t miss…
Read MoreNarcolepsy Grand Rounds Speaker and CE Event Keynote at Nova Southeastern University
I leave for Australia in a few days, where I’ll be a keynote speaker at the Inaugural Narcolepsy Patient Conference hosted by NSG Australia. After returning from Australia, I’ll be taking off for Fort Lauderdale! I’ve been invited to speak at Nova Southeastern University on May 8th for their Grand Rounds and a Continuing Education (CE)…
Read MoreWhy I am Running a Marathon
Recently, I was featured as a Boston College “Soaring Eagle“ – for writing my memoir and founding Project Sleep. This was a huge honor, but also very ironic. While at BC Law, I felt like a total failure. Diagnosed with narcolepsy at the beginning of my second year, I scolded myself for falling behind and never securing…
Read MoreSpeaking at Patients as Partners Conference
On Monday, March 16, 2015, I was honored to speak at Patients as Partners, a conference dedicated to finding solutions on how to truly partner with patients in clinical trials. Representatives from pharma, PCORI, CTTI, FasterCures, FDA, patient advocates and patients all came together in Philadelphia for this important discussion. Many role-models and friends were in…
Read MoreCelebrate Sleep Week with Project Sleep’s SLEEP IN!
Happy Sleep Week, friends! This National Sleep Awareness Week, I can’t wait for Project Sleep’s first-ever international SLEEP IN (#SLEEPIN2015). On March 6-8, we will be taking to our beds to raise awareness about sleep health and sleep disorders while fundraising for Project Sleep. Let’s make PEACE with SLEEP! Sign up today: www.crowdrise.com/SLEEPIN Full details: www.project-sleep.com/sleepin I truly cannot…
Read MoreCataplexy Caught on Camera – Guest Post by Sally Abboud
Four lovely ladies walk into a photo booth, one has narcolepsy with cataplexy, her name is Sally. Something is funny and as Sally laughs, the camera perfectly captures the stages of her cataplexy attack. Sally (top-middle) describes: This was a photo booth at a friend’s wedding that takes a photo every 5 seconds. The three other ladies…
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