Experts and patient advocates from across the board in the Narcolepsy community participated in in a twitter chat– hashtag #NCHAT– last week.
About Global Genes | RARE Project: Global Genes | RARE Project is a leading rare and genetic disease patient advocacy organization. The Foundation’s mission is to unify a global rare and genetic disease community by building awareness and providing connections and resources to positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes | RARE Project unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 250 million people worldwide. For more information, visit https://globalgenes.org/.
Dr. Shelby Harris of Montefiore Medical Center: Shelby Freedman Harris, PsyD, CBSM is Director of the Behavioral Sleep Medicine Program at the Sleep-Wake Disorders Center at Montefiore Medical Center and Assistant Professor of Neurology as well as Psychiatry at the Albert Einstein College of Medicine. She is board certified in Behavioral Sleep Medicine by the American Academy of Sleep Medicine. A graduate of Brown University, Dr. Harris received her doctorate in clinical psychology from Ferkauf Graduate School of Psychology, Yeshiva University. Dr. Harris completed her pre-doctoral internship at Montefiore Medical Center where she trained in the Sleep-Wake Disorders Center, and has received advanced postdoctoral training in Cognitive Behavior Therapy (CBT). As a licensed psychologist, Dr. Harris specializes in behavioral sleep medicine and CBT for anxiety and depressive disorders. She has published and presented research on the neuropsychological effects of insomnia in older adults as well as behavioral treatments for insomnia, parasomnias and narcolepsy.
Julie Flygare: Julie Flygare, JD, is a leading narcolepsy spokesperson, published author, and blogger diagnosed with narcolepsy with cataplexy in 2007. She received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009. In 2012, Julie published “Wide Awake and Dreaming: A Memoir of Narcolepsy,” which won first prize in the San Francisco Book Festival Bio/Autobiography Award 2013. Julie has spoken about narcolepsy to scientific researchers, doctors, nurses, college and medical school students, NIH, FDA and CDC representatives. Her story has been featured by Marie Claire, ABC, NBC, Psychology Today and Discovery Channel. She is the creator of the NATIONAL SLEEP WALK and the NARCOLEPSY: NOT ALONE international awareness campaign. Julie currently serves on NIH’s Sleep Disorder Research Advisory Board and lives in Los Angeles, CA. https://www.julieflygare.com
Wake Up Narcolepsy: Wake Up Narcolepsy has quickly become a national leader for narcolepsy research and awareness, as it is dedicated to funding research into the causes, prevention, treatments and a cure for narcolepsy while increasing awareness amongst the public. Every year, Wake Up Narcolepsy hosts various awareness-driven events and makes substantial contributions to cutting-edge narcolepsy research across the country. To read more about Wake Up Narcolepsy’s awareness, fundraising, science and advocacy efforts, please visit their site: https://www.wakeupnarcolepsy.org.