In Case You Missed It! – May 2019
In this month’s “In Case You Missed It!”, keep up to date with news we’ve shared with the sleep disorder community via social media this past month. So don’t worry if you’ve missed anything – we’ve got you covered!
CHECK OUT THE UPDATED DETAILS OF OUR HF EDUCATIONAL MEETING IN SEATTLE ON JUNE 29
PODCAST FEATURES IH
We are excited to share a special episode of Wake Up Narcolepsy’s podcast “Narcolepsy 360” focusing on idiopathic hypersomnia. This episode features Hypersomnia Foundation Board member Betsy Ashcraft sharing her journey as a parent of a child with IH and the challenges she faced trying to get a correct diagnosis for her son. Listen to Betsy’s story HERE.
HF BIENNIAL REPORT PUBLISHED
We are very excited to share with everyone our digital Biennial Report, spanning the Hypersomnia Foundation’s activities and achievements over the last two years.
We are very grateful for our donors and volunteers who support our shared goal: to improve the lives of people with IH and related disorders. We hope, as you read through our Biennial Report, you will be proud of what we have accomplished together. Our progress and achievements, now and in the future, are only possible with everyone’s continued support.
YOUR HELP WITH THE “SURVEY STUDY ON AUTONOMIC IMPAIRMENT IN ADULTS WITH IH”, WHICH THE HF PROMOTED LAST YEAR, HAS YIELDED RESULTS
The researchers found that people with IH reported extremely high levels of autonomic dysfunction, on par with other conditions of severe autonomic failure, like MSA (multiple system atrophy) and type 1 diabetes. They presented these results on May 9 at the 2019 annual meeting of the AAN (American Academy of Neurology). They also hope to have some follow up studies soon, with a more detailed exploration of the potential mechanisms involved.
AVADEL’S REST-ON PHASE 3 CLINICAL TRIAL IS NOW RECRUITING IN THE U.S.
Enrollment is open for patients aged 16 years or older with a current diagnosis of narcolepsy with cataplexy. Trial sites are available in the U.S., Canada, U.K., Germany, France, Czech Republic, Finland, and Australia. If a patient is selected to participate in the trial, travel support is available based on their location.
The REST-ON (Randomized study Evaluating the efficacy and SafeTy of a Once Nightly formulation of sodium oxybate) trial is a double-blind, randomized, placebo-controlled, two-arm, multicenter, phase 3 clinical trial evaluating FT218, an investigational extended-release oral suspension of sodium oxybate. This trial will assess the safety and efficacy of investigational sodium oxybate for the once-nightly treatment of excessive daytime sleepiness and cataplexy in patients with narcolepsy.