SomnusNooze e-newsletter
News, stories and updates from the world of sleep
National Sleep Awareness Week | March 6-13 | #beyondsleepy
During National Sleep Awareness Week, which begins this coming Monday the Hypersomnia Foundation would like to feature your stories and your experiences as a person with idiopathic hypersomnia. We want to showcase how idiopathic hypersomnia affects... read >
A United Effort to Fuel Research on Hypersomnia
A patient registry specific to hypersomnia has been a goal of the Hypersomnia Foundation (HF) since its incorporation in 2014. A patient registry houses information about a group of people with a medical... read >
Hypersomnia Registry Process | A Rare Disease Day Update
Feel free to share the images below on social media in honor of Rare Disease Day! Right click and save the image to your own computer, and then upload to social media. Cover Photo Social Media Infographic ... read >
Strategies for Coping with the Side Effects of Medications
IMPORTANT NOTE: If you think you may be experiencing side effects from your treatments, be sure to discuss these with your healthcare providers, who can help you consider other treatment options. By TONI BERNHARD, JD Many of us who suffer from... read >
Your Journey Fosters Awareness
There is no greater agony than bearing an untold story inside you—Maya Angelou Your personal story about hypersomnia is a powerful means to raise awareness of a journey with a rare chronic disorder. Although each person’s experiences are unique,... read >
What Does One SOREMP Mean?
Background The primary feature of the two main central disorders of hypersomnolence—narcolepsy and idiopathic hypersomnia (IH)—is excessive daytime sleepiness, defined in the International Classification of Sleep Disorders, third edition,... read >
The Cost of Prescription Medications Has Risen by More Than 20% in the Past Year
See our Disability and Insurance web page for updated content—to learn more about finding insurance and filing claims successfully in order to access the treatments you need at an affordable price or set up a disability income stream if you can no... read >
Summary of Rationale Behind and Research Studies into L-carnitine as a Treatment for Narcolepsy
Background In this 2013 study published in PLoS One, the researchers Miyagawa et al hypothesized that L-carnitine supplementation might help improve narcolepsy symptoms by increasing β-fatty-acid oxidation. Fatty acids are a major energy source for... read >
2015 HF Year in Review
“Overwhelmed!” “Excited!” “Incredibly grateful!”at the Hypersomnia Foundation, we are thrilled beyond belief following our “Giving Tuesday” campaign that expanded beyond a single day and actually ran through the end of 2015. Your... read >
BUNIHPPS Study Final Reminder
This is your final reminder email about BUNIHPPS- a survey research study for patients with narcolepsy or idiopathic hypersomnia. Dr. William DeBassio and Sara Kowalczyk are the study investigators of the Boston University Narcolepsy and Idiopathic... read >