Join us on August 8th at 2pm ET for “Social Security Disability for People with Narcolepsy!” Hear Angel Burgess, JD, share her extensive knowledge of the Social Security Disability system. Learn about the process, qualifications, other options and so much more.  Bring your questions for this opportunity to “ask the experts!” Register now! With a master’s degree in Gerontology and a pre-medicine background, attorney Anjel F. Burgess brings a unique understanding to the practice of disability law. Cases often hinge on the ability to explain the evidence in a way that demonstrates a client’s ..read more

Written by Tatiana Maria Corbitt, MS Hello and welcome back to Narcolepsy Perspectives! The Wake Up Narcolepsy 2024 National Summit near Seattle, Washington, was a smashing success!  Experts in the sleep field, medical professionals and patients alike, sure taught us a lot. Some of my favorite moments during the National Summit included meeting so many Narcolepsy friends in-person for the first time, watching my Narcolepsy service dog perform her duties in a highly-populated environment and speaking on a very important panel! During the Summit, I had the privilege of sharing my experience ..read more

PLYMOUTH MEETING, Pa., June 24, 2024 /PRNewswire/ — Harmony Biosciences (Nasdaq: HRMY) today announced that the U.S. Food and Drug Administration (FDA) has approved its supplemental New Drug Application (sNDA) for WAKIX® (pitolisant) tablets for the treatment of excessive daytime sleepiness (EDS) in pediatric patients 6 years of age and older with narcolepsy. The FDA separated the submission into two sNDAs for administrative purposes to issue an approval for the treatment of EDS and a complete response for the treatment of cataplexy in pediatric patients (6 t ..read more

Wake Up Narcolepsy (WUN) is excited to announce “Step Up For Sleep” events! Just like WUN Town Halls, these local fundraising walk/runs take place in different communities around North America and can include an educational component. There is something for everyone! Each event can be tailored to the community planning it. There are two scheduled events currently with plans for more in the works! West Virginia Step Up For Sleep will take place on August 3rd and Colorado Step Up For Sleep will take place on September 28th! If you’re interested in learning more and helping out with a Step Up For ..read more

Wake Up Narcolepsy (WUN) is excited to share the video series “Kevin Skateboards Across Colorado,” put together by the Yeatts family! Below is a message from Kevin Yeatts, along with a few photos of the journey. “My name is Kevin Yeatts and I invite you to watch as I skate across the state of Colorado on my skateboard. Days 6 and 12 are dedicated to Wake Up Narcolepsy and our son, Owen, who is a person living with narcolepsy, who developed sudden and severe onset of symptoms at the age of 10 1/2. He has had to face many challenging hills, valleys, and roads in his journey with narcolepsy but t ..read more

Lifestyle Factors Survey in Narcolepsy and Idiopathic Hypersomnia  Mayo Clinic Jacksonville Date: June 10, 2024   We are conducting a survey to study the effect of lifestyle factors in narcolepsy and idiopathic hypersomnia patients due to a lack of knowledge in this area. These factors include diet, exercise level, and substance use. Understanding the relationship of lifestyle factors and hypersomnia disorders may offer new insight to improving the health outcome of patients. Participation in the study is completely voluntary. This survey consists of a series of four short questionna ..read more

June 4, 2024 Dear Tammy, Monica and the Wake Up Narcolepsy community, Yesterday, during the SLEEP 2024 annual meeting in Houston, we announced positive final results from the Phase 2 clinical trial of KP1077. The placebo-controlled double-blind trial evaluated the safety and tolerability of KP1077 in patients with idiopathic hypersomnia. Results demonstrated that KP1077 was well tolerated and showed meaningful clinical improvements in patient-reported daytime sleepiness, sleep inertia, and brain fog. Key takeaways from the Phase 2 clinical trial of KP1077 for idiopathic hypersomnia include ..read more

Do you have a diagnosis of type 1 narcolepsy with cataplexy? Have you given birth within the last 2 years? Do you currently live in the United States or Canada? If yes to all three of these questions, please continue reading to learn more about a research study that you may be eligible for. Narcolepsy researchers are conducting a survey study of adults with type 1 narcolepsy and recent pregnancies in order to assess the impact of narcolepsy on pregnancy, and vice versa. The study team consists of narcolepsy researchers at Beth Israel Deaconess Medical Center, including Dr. Maggie Blattner, Dr ..read more

Wake Up Narcolepsy (WUN) is thrilled to announce the launch of “Resources for Physicians & Healthcare Professionals!”  This new page is designed to support professionals in providing optimal care for individuals with Narcolepsy. It is divided into two main sections: Office Resources and CME Courses.  Office Resources Find options to print and/or order our materials (at no cost) to help streamline information to your patients! We have information about who we are and how we can help available as a poster to hang up or as cards to hand out. We also have an informational poster abou ..read more

Does your child have Narcolepsy or Idiopathic Hypersomnia? Does your family want help improving their social relationships? Then you may be eligible to participate in a study at Boston Children’s Hospital. We have developed an online psychoeducational website designed to help improve social relationships in adolescents with narcolepsy and idiopathic hypersomnia. For this study, we would like your feedback on the website’s usability, acceptability, and feasibility. Who is eligible for this study? Child/Adolescent with narcolepsy or idiopathic hypersomnia between the ages of 10-17 AND one paren ..read more