Narcolepsy
Raising Narcolepsy Awareness with Holiday Greetings
Mailing Season’s Greetings this December? Introducing REM Runner’s Dreamy Holiday Fun Facts (PDF) designed especially to insert in your holiday cards – if you so desire! Feel free to download, print, photocopy and share. To send more in-depth info, use my Narcolepsy Quick Facts (PDF). Around this time last year, my friend and blog follower, Kathleen, contacted…
Read MoreNarcolepsy Awareness Video 4: What Is Cataplexy?
I’m so excited to release my new narcolepsy awareness video, “What is Cataplexy?” about this major symptom of narcolepsy that is little known by the general public. Watch here or on YouTube. Thank you for watching. Come back soon for a follow-up video on communicating about cataplexy. Many many thanks to Alex Withrow for his…
Read MoreA Note of Thanks & FDA Update
This Thanksgiving, I’m grateful for your support. FDA Update:Last month, I launched the campaign for narcolepsy’s inclusion in the FDA Patient Focused Drug Development Initiative, but I could not do this alone. I’m thrilled to report that we came together as a unified voice in support of narcolepsy. By my unofficial count, a few HUNDRED…
Read MoreWhen your book becomes a book…
If you set out to write a book, prepare to dig deep. For the longest of excruciating long times, you will be “in the process” and have little to show for it. For yourself. For your dream. Just one Word Doc that you keep re-naming with the new date as time rushes by. You will…
Read MoreMacy Gray Raises Narcolepsy Awareness
“Narcolepsy can be really damaging to your quality of life.” – Macy Gray Macy Gray recently spoke about narcolepsy in an in-depth interview with HuffPost Live. Macy stated that a close family member has struggled with narcolepsy for many years. “It’s very debilitating,” explained Macy Gray, a world-famous singer-songwriter, record producer and actress. Our narcolepsy wizard,…
Read MoreGathering for Families of Children with Narcolepsy in Washington DC
Has your child or teen been diagnosed with narcolepsy? You and your family are not alone! Next Saturday, my amazing Washington DC support group is hosting a get-together for young adults and families with narcolepsy. Families, caregivers and friends come together for an informative afternoon. Teens and young adults with narcolepsy are also encouraged to attend…
Read MoreNarcolepsy Awareness Video 3: Communicating Invisible Symptoms
Narcolepsy symptoms are very real, but often invisible to outsiders. I’m thrilled to release my third narcolepsy awareness video, sharing a personal story of communicating with my loved ones about invisible symptoms. The interview was recorded a few weeks ago hence the same outfit from my intro video. To my lovely ladies: Lexie, Phoebe, Melissa and…
Read MoreNarcolepsy Research Update 2012
Neurology Today features a great article highlighting narcolepsy research developments with leading researcher Dr. Thomas Scammell (of Harvard Medical School and Beth Isreal Deaconess). Dr. Scammell’s dedication to narcolepsy research is inspiring. During our presentations together at Harvard Medical School, his eyes light up when he describes the advancements made and challenges remaining towards unraveling…
Read MoreThings I love: Powerful Poetry
Tears on my faceby: Elizabeth Olsen Tears on my face,No place to go Mind stuck in time, Body out of control. Burning inside A feeling I died Things that are not there Sounds I can share Hope is fleeting Time defeating Who would dare A battle unfair Light traps the dream I can not scream…
Read MoreSecond Narcolepsy Awareness Video from the NN Conference: Communicating about Sleepiness
I’m excited to release my second narcolepsy awareness video, shot at the 2012 Narcolepsy Network (NN) Annual Conference in Cleveland, OH. Thank you for all those who attended my sessions! In this video, I re-cap my conference experience and offer a few strategies for communicating about the excessive daytime sleepiness (EDS) of narcolepsy. Watch below…
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