In Case You Missed It! – June 2021

Don’t worry if you’ve missed any of the latest news we’ve shared through our social media. Get up to date with this edition of “In Case You Missed It!”

  • REGISTER NOW: For HF’s June Meet-and-Greet and June Medication Access Event!
  • THANK YOU: HF’s Sleep/Wake Cyclers Team raises over $13,000 for research.
  • NOW RECRUITING: Check your eligibility for three currently recruiting studies.
  • GREAT NEWS: Positive results released from the Phase 3 study of Xywav.
  • GET SHOPPING: Shop AmazonSmile this Father’s Day and support HF.

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


REGISTER FOR TWO FREE HF VIRTUAL EVENTS THIS MONTH

Virtual Meet & Greet—”Self Advocacy: Getting Your Best Care”  Thursday, June 17 at 7:00 p.m. (Eastern)

Turn your cameras on as we talk about the challenges of advocating for timely and quality care for idiopathic hypersomnia, narcolepsy and Kleine-Levin syndrome. Following a short panel presentation, we’ll break into chat rooms to talk about this issue together. Co-hosted by Hypersomnia Alliance Co-Founder Diana Kimmel and HF Board Members Sarah Beazley and Veronica Moore. Register for our Virtual Meet & Greet HERE.

Your Best Self: Getting Your Meds!
Thursday, June 24 at Noon (Eastern)

In an ideal world, your doctor gives you a prescription for a medication, the pharmacy fills it promptly, and insurance covers all or most of the cost. Unfortunately, many people with IH or related sleep disorders regularly experience breakdowns in this process. What if the out-of-pocket costs are very high? What if the insurer denies coverage altogether? What if you don’t have insurance in the first place? For this webinar, we’ve invited two speakers who are experts in the field of drug access and affordability and insurance appeals to tell us about the programs and strategies that we can use when issues arise. Register for “Your Best Self” HERE.

For more details about these upcoming events, visit our “Events” page.


THANK YOU TO HF’S SLEEP/WAKE CYCLERS TEAM! 

Thank you to our amazing SLEEP/WAKE CYCLERS international biking team who rode on June 12th to raise awareness and funds for research on idiopathic hypersomnia and related sleep disorders. Over $13,000 was raised as of June 12th!

For more information and to make a donation to support our team, go to our “Sleep/Wake Cyclers” page.

 


RESEARCH STUDIES CURRENTLY RECRUITING

The Sleep Center at Emory University is currently recruiting people without sleep disorders, ages 18-45, in the Atlanta area. Dr. Lynn Marie Trotti and other Emory sleep researchers are looking for participants for a study investigating how the microorganisms in the gut (known as the “microbiome”) might affect sleepiness. Participation involves a visit to the Emory Sleep Center for questionnaires and a blood draw, and collecting a stool sample at home to bring back to the Sleep Center. Total time is estimated at 1 hour, and participants will be compensated.

If you are a good sleeper without any diagnosed sleep disorders and would like more information, please contact Natalie Fernandez via phone (404) 778-6114 or email at or email Dr. Trotti at .

The Behavioral Sleep Medicine Lab at Northwestern is recruiting people diagnosed with narcolepsy and struggling with depression or anxiety. Study will be evaluating the feasibility of a mindfulness meditation program designed to reduce psychological distress for people with narcolepsy. Eligible volunteers will be asked to: Complete an assessment to determine eligibility to participate; Participate in a mindfulness intervention delivered through live videoconferencing; Complete study assessments every four weeks for 12 weeks.

If you are interested in taking part in this study, please email or call (312) 503-6627. The Principal Investigator is Jennifer Mundt, Ph.D. / STU00209890.

Adelphi Values is looking for adults who have participated in the Jazz Pharmaceuticals’ JZP-258 clinical trial to participate in a 75-minute interview to discuss their overall experience with IH, the clinical trial, and overall experience completing the Idiopathic Hypersomnia Severity Scale (IHSS) during the clinical trial. Participation in this study will help research into future treatments for IH.

If interested in participating, email IH. or call (617) 910-6358 to obtain additional information about the study and to have any questions you may have about the study answered. Please reference the study name “IH Exit Interview Study” or study number “JZ8926A” and ask for the Adelphi Values staff member Julia Cotney. No medication will be administered as part of this interview. Participants will receive $126 once the interview is completed.

For details about these and other currently-recruiting studies, go to our “Clinical Studies/Research Studies” page.


XYWAVTM RESULTS RELEASED FROM PHASE 3 STUDY

Jazz Pharmaceuticals has announced positive results from the Phase 3 study of Xywav (calcium, magnesium, potassium, and sodium oxybates) oral solution in adult patients with idiopathic hypersomnia. “The dramatic improvements Xywav provided for participants within this study give hope to not only those living with idiopathic hypersomnia but also to their families, friends and care teams,” said Yves Dauvilliers, M.D., director of the Sleep Disorders Centre at the Gui de Chauliac Hospital in Montpellier, France and lead investigator of the Phase 3 study. “People with idiopathic hypersomnia sleep a normal, or longer than normal, amount of sleep each night, but still experience excessive sleepiness during the day. If the new indication is approved by the FDA, I believe Xywav will make an immediate impact on patients living with idiopathic hypersomnia.”

Read more in the online edition of “RT Sleep World.”


SHOP AMAZON SMILE THIS FATHER’S DAY

Spread the love to the Hypersomnia Foundation this Father’s Day when you shop AmazonSmile for the dads in your life! Simply start your shopping at AmazonSmile and confirm “Hypersomnia Foundation” as your charity of choice and Amazon will donate a portion of your purchase price to our organization. It’s a gift for Pop and a free gift to the Hypersomnia Foundation!

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