Video
Watch Now: How a Patient Helped Define A New Clinical Endpoint with FDA
How did I catch the “Advocacy Bug”? Why is the patient voice important? Watch my TED-style talk on the power of narcolepsy advocates working directly with FDA to build a brighter future. I gave this speech to over 300 clinical trial development experts in the pharmaceutical industry at the Disruptive Innovations Conference in Boston, MA on Sept.…
Read MoreFilming the Honda Narcolepsy PSA
Over the past few months, I’ve worked with Honda and a Honda agency, RPA, to create a narcolepsy public service announcement (PSA). I’m so proud and honored to have served as a real face and voice of narcolepsy for this project. In preparation, I shared my memoir, fact sheets, patient experience and key awareness points. It…
Read MoreViral Narcolepsy with Cataplexy Video
A video of a young woman with narcolepsy and cataplexy has gone viral. Watch below or on YouTube. This is a powerful video and I am grateful to Sarah Elizabeth for bravely sharing her experience! Sarah Elizabeth is primarily experiencing a narcolepsy symptom called cataplexy here. Cataplexy is a sudden loss of muscle tone, resulting in…
Read MoreWatch: Disruptive Innovations Interview on Narcolepsy, FDA & Project Sleep
I’m thrilled to share my Disruptive Innovations interview with the Conference Forum’s Exec. Director, Valerie Bowling. This fun discussion on narcolepsy, FDA and Project Sleep was filmed before my speech at the TCF’s Disruptive Innovations Conference in Boston, MA on Sept. 11, 2014. Thank you so much to Valerie and the Conference Forum’s team for…
Read MoreWatch Video: Taking on #ALS #IceBucketChallenge
Tonight, I took on the ALS Ice Bucket Challenge. I was excited to participate in this viral awareness and fundraising campaign, as my Uncle Bill died of ALS and his courage inspires me every day as a narcolepsy advocate. I got the idea of taking the Ice Bucket Challenge in the scenic Griffith Park, during one…
Read MoreUnveiling Project Sleep’s Logo & Introductory Video
As founder of Project Sleep, I’m thrilled to unveil our beautiful new logo in this introductory video: Thank you for celebrating this exciting step forward with Project Sleep! Our new website is on its way soon along with other announcements and events. A big thank you to Alex Withrow for his amazing photography and video production. Please…
Read MoreNarcolepsy on The Doctors Show
On Thursday, May 22, 2014, narcolepsy will be featured on The Doctors Show. Please check for local listings here. As a narcolepsy spokesperson and author of Wide Awake and Dreaming: A Memoir of Narcolepsy, I’m so thrilled that the Doctors Show will highlight narcolepsy on TV. Thank you to my brave and beautiful friend and co-advocate,…
Read MoreNARCOLEPSY: NOT ALONE on NBC News in Chattanooga TN
NARCOLEPSY: NOT ALONE is on the news! I’m thrilled to share that NBC News Channel 3 WRCB in Chattanooga, TN featured the NNA campaign in a terrific segment with my friend and fellow advocate, Valencia Blake. WATCH HERE. The segment beautifully describes the NARCOLEPSY: NOT ALONE campaign as a nationwide effort to reach people with…
Read MoreNARCOLEPSY: NOT ALONE featured by NBC News in Alaska
NARCOLEPSY: NOT ALONE on the news? It’s true! NBC News Channel 2 KTUU in Alaska recently featured the campaign in a fantastic story about my friend and fellow advocate, Heather. WATCH HERE. Interestingly, the NARCOLEPSY: NOT ALONE campaign helped pave the way for this story. About a month ago, Heather worked hard to coordinate an amazing campaign…
Read MoreWatch Now: International Narcolepsy Broadcast
Thank you to everyone who tuned in today for my international narcolepsy broadcast! If you missed it, watch on YouTube or below: Friends all over the US and around the world in Canada, Europe and Australia watched live! Thank you for your incredible support. Happy Suddenly Sleepy Saturday!
Read More