In Case You Missed It! – January 2021

Happy New Year! Let’s start 2021 getting up to date with the latest news we’ve shared via social media with this latest edition of “In Case You Missed It!”

  • FREE HF VIRTUAL EVENT: Register today for “Your Best Self: New Ways of Thinking About Disability & Support.”
  • GET INVOLVED: Be a voice for rare disease!
  • FDA SUBMISSION: Avadel Pharmaceuticals announced the submission of its New Drug Application to the U.S. FDA.
  • INFORMATIVE READ: More U.S. patients to have easy, free access to doctor’s notes.
  • DID YOU KNOW?: Visit the HF website for IHFacts and information.

Happy 2021 and don’t worry if you’ve missed anything. We’ve got you covered!


REGISTER FOR OUR FREE VIRTUAL EVENT – YOUR BEST SELF: NEW WAYS OF THINKING ABOUT DISABILITY & SUPPORT

Join us on January 30 for a FREE, virtual program – Your Best Self: New Ways of Thinking About Disability & Support. During this interactive, 90-minute event, you will learn about the emotional aspects of disability and how to choose the right support group for you—or even start your own. You will not want to miss this virtual event!

Sessions will include discussions with:

  • Anjel Burgess, Esq., of Burgess & Christensen in Atlanta. She is a prominent disability attorney and HF Board member, who has represented numerous people with IH and related disorders who are applying for disability. Many people have an emotional reaction to the word “disability” and for people with a sleep disorder, the term can be especially confusing. Am I disabled? What does this mean for me? Anjel will share her observations of the emotional aspects of that journey, and how to manage those hurdles. Whether or not you expect to apply for disability benefits, you won’t want to miss this important discussion!
  • Diana Kimmel of the Hypersomnia Alliance. She is a well-known (and extraordinary) patient advocate in the hypersomnia community. Diana co-organizes the popular “Snooze Cruise” retreats, and facilitates a support group in Atlanta. Are you wondering if there are others out there who are looking for a support group? How do you find them, what makes a successful support group—should you try to start one yourself? Diana will share what makes a support group successful, and the nuts and bolts of organizing virtual and in-person groups.

You will not want to miss this virtual event! Register on our “Events” page.


BE A VOICE FOR RARE DISEASE!

Registration is now open for #RareAcrossAmerica. Meet virtually with Congressional Senators and Representatives, share your story, and make rare diseases a priority in the 117th Congress.

FREE virtual workshops and trainings begin February 22. During these workshops, you will learn how to share your rare disease story, receive legislative resource materials and prepare for your virtual congressional meetings.

No prior experience necessary. Be a voice for rare disease and make an impact on federal policy. Register HERE.


AVADEL PHARMACEUTICALS SUBMITS NEW DRUG APPLICATION TO FDA

Avadel Pharmaceuticals recently announced the submission of its New Drug Application to the U.S. Food and Drug Administration for FT218, an investigational, once-nightly formulation of sodium oxybate designed to treat excessive daytime sleepiness and cataplexy in adults with narcolepsy.

Greg Divis, Chief Executive Officer of Avadel, said, “If approved, we believe once-nightly FT218 has the potential to provide a valuable treatment option for sodium oxybate eligible narcolepsy patients, including those who are not satisfied with the current twice-nightly treatment, which requires waking up in the middle of the night to take a second dose.”

To learn more, read Adavel’s complete announcement.


MORE U.S. PATIENTS TO HAVE EASY, FREE ACCESS TO DOCTOR’S NOTES

More U.S. patients will have free, electronic access to the notes their doctors write about them under a new federal requirement for transparency.

Patients have long had a right to their medical records, including doctor notes, but obtaining them could mean filling out requests, waiting for a response and paying fees. Many patients will now have options allowing them to view doctor’s notes and see test results as soon as they are available.

What is the benefit? Studies have shown that patients who read their notes understand more about their health, take their medications as prescribed more often and feel more in control of their care. Learn more here.


DID YOU KNOW?  SHARE IH FACTS WITH FAMILY AND FRIENDS

IHFACT — DID YOU KNOW? Melatonin is a hormone that the body produces to regulate sleep. The production and release of melatonin is connected to the time of day – increasing when it is dark outside and decreasing when it is light.

A few studies have suggested that melatonin might also be helpful in the treatment of #IH. One small study, which used a dose of 2 mg slow-release melatonin at bedtime, found that 50% of participants had “shortened nocturnal sleep duration, decreased sleep drunkenness and relieved daytime sleepiness.” Other studies have shown that melatonin synchronizes the circadian rhythms, and improves the “onset, duration and quality of sleep.”

Read more about melatonin on our “MEDICAL TERMINOLOGY” page and for more information on the melatonin study and other treatments, go to our “TREATMENT” page.

We know it can sometimes be difficult explaining IH to family and friends. To increase awareness of and educate others about IH and help people better understand symptoms of this chronic neurological disorder, share our “CLASSIFICATION OF HYPERSOMNIAS” and the “ABOUT IDIOPATHIC HYPERSOMNIA” overview with family, friends, and medical professionals.

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