In Case You Missed It! – July 2021

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Summer has arrived as warm weather and sunshine beckons us to enjoy the great outdoors! If you’ve missed any of the latest news we’ve shared through our social media, don’t worry! Get up to date with this edition of “In Case You Missed It!”

  • MUST WATCH: Video recording released of HF’s recent event “Your Best Self: Getting Your Meds”
  • THANK YOU: Meet HF’s PAAC Members
  • INTERESTING READ: HF featured in “Healthier Sleep” Magazine
  • MUST WATCH: Video interview with Dr. Isabelle Arnulf – Xywav & IH
  • RECRUITING SOON: Planned Phase 2a Narcolepsy Clinical Trial beginning August 2021
  • VIRTUAL CONFERENCE: Canadian Sleep Society’s virtual conference scheduled for October 2021

Don’t worry if you’ve missed anything. We’ve got you covered!


We are excited to release the video recording of “YOUR BEST SELF: Getting Your Meds” – the Hypersomnia Foundation’s recent virtual educational event held on June 24, 2021 which discussed how to reduce out of pocket cost for prescription medications and appealing insurance denials.

Recorded sessions include presentations by:

CARLA DELLAPORTA — Carla is the Director of User Engagement at Needymeds, which is a non-profit organization that connects people to programs that will help them afford their medications and other healthcare costs. She will tell us about the many resources and links to programs that can be found on the Needymeds website. Needymeds has partnered with the Hypersomnia Foundation to develop an  information page dedicated to idiopathic hypersomnia and with Wake Up Narcolepsy for a page on narcolepsy.

LAURIE TODD — Since winning her own insurance battle for lifesaving surgery in 2005, Laurie has gone on to write and fight 232 appeals for others – all different conditions, all different insurers, all over the country. Countless others have won their appeals using her latest book “APPROVED: Win Your Appeal in 5 Days.” Laurie will share her unique approach to making insurance companies pay their fair share.

Watch and share with family and friends and be sure to check out our other videos and podcasts and our Disability and Health Insurance web pages.


We are grateful for the members of our Patient Advisory and Advocacy Council (PAAC), dedicated to help advocate to improve the lives of people with hypersomnias—which often includes their own friends or family. The PAAC provides important feedback and guidance to the Hypersomnia Foundation and shares the needs and concerns of the hypersomnia community, so we can better support people with sleep disorders, their families, and caregivers.

We greatly appreciate their time and dedication to the hypersomnia community!


The Hypersomnia Foundation was selected as the “Patient Organization Highlight” in a recent edition of “Healthier Sleep” magazine.

In addition to sharing HF’s history, mission, and future plans, Diane Powell, Chair of our Board of Directors and CEO, explained in her interview how idiopathic hypersomnia is a rarely diagnosed sleep disorder. She said, “I have been most struck by how long people with this disorder struggle on their own—often blaming themselves for their need to sleep and bearing the blame of others—before getting a diagnosis. For many people, it takes years to get a proper diagnosis. Often the news they have a sleep disorder is received with relief and emotion.” Diane continued by stating, “We will continue to work on behalf of people with IH and related disorders for a long time to come—until everyone with these sleep disorders is #BeyondSleepy.”

Read Diane’s complete interview in the online edition of “Healthier Sleep.”


Isabelle Arnulf, MD, PhD, Senior Neurologist, and Professor, Neurology, Sorbonne Universités, Pierre and Marie Curie University, and a member of the Hypersomnia Foundation’s Medical Advisory Board, discusses findings of significant improvement observed in patients with idiopathic hypersomnia undergoing lower-sodium oxybate treatment (Xywav).

Watch Dr. Arnulf’s 5-minute video interview on AJMC-TV or read the transcript.


NLS Pharmaceutics, a Swiss clinical-stage pharmaceutical company focused on the discovery and development of innovative therapies for patients with rare and complex central nervous system disorders, announced that the U.S. Food and Drug Administration (FDA) has accepted its Investigational New Drug application (IND) for Quilience® (mazindol extended release, or mazindol ER), the Company‘s lead drug candidate, for the treatment of narcolepsy. The open IND enables NLS to initiate its Phase 2a clinical trial to assess the safety and efficacy of Quilience® in patients diagnosed with narcolepsy.

The proposed multi-center study, to be conducted in both the U.S. and Europe, is expected to enroll 60 patients and commence in August 2021. The primary endpoint is the change from baseline in excessive daytime sleepiness (EDS) as measured by the Epworth Sleepiness Scale (ESS), and a key secondary endpoint is the change from baseline in mean weekly number of cataplexy attacks in the anticipated subset of patients with cataplexy.

“We are pleased to now have an open IND so that we can initiate our clinical program with Quilience®, our novel formulation of mazindol ER, for the treatment of narcolepsy,” said Alex Zwyer, Chief Executive Officer of NLS. We remain on track to commence our prospective Phase 2a clinical trial for Quilience® next month as we focus on bringing this treatment option to patients suffering from narcolepsy as soon as possible.”

For information about currently-recruiting and ongoing clinical studies, visit our “Currently Recruiting Research Studies” page.


The Canadian Sleep Society (CSS) is hosting a virtual conference October 28-30, 2021. In addition to the main scientific program, the conference will feature patient engagement sessions for the public, which will be fully accessible online for free. Visit our “Events” page for conference details and updates.

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