In Case You Missed It! – April 2019
Keep up to date with all the news we’ve shared with the sleep disorder community in this month’s “In Case You Missed It!” TAKE ACTION by clicking to support NORD’s advocacy. Read about a runner with IH competing in the upcoming Boston Marathon. If you have a child with IH, we’re sponsoring camperships for an IH and narcolepsy camp. Catch up on the latest research news, including updates on clinical trials from Jazz Pharmaceuticals and Axsome Therapeutics. So don’t worry if you’ve missed anything – we’ve got you covered!
ADVOCACY ALERT! SUPPORT THE ORPHAN DRUG ACT RESOLUTION!
This March, Representatives GK Butterfield and Gus Bilirakis introduced a resolution that celebrates the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation to ensure the ODA remains strong! Prior to the ODA’s enactment in 1983, only 34 therapies for rare diseases existed. Today there are over 770 therapies on the market to treat rare diseases, largely due to the pharmaceutical industry incentives within the ODA –- but over 90% of rare diseases are still without a single FDA-approved treatment. We must advocate for continued support of the ODA!
Please email your Representative and ask them to demonstrate their support for the ODA by cosponsoring H.Res. 242. It’s really easy! Just click HERE, provide your address and zip code, and a prewritten email requesting their support pops up already addressed to your Representative. Hit “SEND” and you’ve taken action! Let’s be our own advocates to get #BeyondSleepy!
APPLY NOW FOR THE CENTER FOR COURAGEOUS KIDS CAMP
The HF is happy to be partnering with Wake Up Narcolepsy to sponsor five camperships for children with IH and their families at The Center for Courageous Kids’ camp in Scottsville, Kentucky. This camp is for children ages 5 through 17 and will take place October 11-13, 2019. Registration is now open!
Children will have a weekend filled with horseback riding, archery, bowling, arts and crafts, and more! Parents will have the opportunity to attend informational sessions and meet other parents of children with sleep disorders for ample peer-to-peer discussions. Attendance is free, as Wake Up Narcolepsy is funding camperships for children with narcolepsy, and the Hypersomnia Foundation is funding camperships for children with IH. Families are responsible for travel expenses. Camperships will be filled on a first-come, first-served basis, and registration is open now!
For more information, email or click HERE!
RUNNER WITH IH COMPETING IN BOSTON MARATHON
Cheer her on! A runner with IH is competing in the Boston Marathon on April 15! Elizabeth Riley, a veteran runner of two marathons (and eight half-marathons in 2018 alone), is competing as part of the annual Wake Up Narcolepsy team. Although the funds she is raising will go to narcolepsy research, we salute her for choosing to run in support of research into rare sleep disorders. As we all know, research into other sleep disorders often provides insights into IH. Good luck, Elizabeth!
You can read more about Elizabeth HERE.
LET A SLEEPING DOG LIE… WITH YOU
A new study conducted by the University of Alberta suggests that letting your dog sleep with you is good for chronic pain sufferers. According to researcher Cary Brown of the Faculty of Rehabilitation Medicine, sleeping with your dog creates an “overwhelmingly positive” experience for people. Brown said, “A sense of relaxation and caring are emotions that release positive hormones in our bodies that will help us sleep better.” Having pets sleep with you can also help ward off feelings of loneliness that often go hand-in-hand with a chronic health issue. Grab your four-legged friend and read more about the study HERE.
UNC MEDICAL SCHOOL INTRODUCES FUTURE DOCTORS TO SLEEP MEDICINE EARLY
An observant sleep medicine physician approached the school with a pitch: expose third- and fourth-year students to the sleep subspecialty. Medical school curriculums generally don’t take a deep dive into sleep medicine. Some medical students may not even realize they have the option to subspecialize in sleep. This gap in education may be fueling a shortage of sleep medicine physicians, but some medical schools are taking steps to change that. The University of North Carolina recently appointed Muhammad Sayed, MD, RST, RPSGT, to develop a sleep medicine curriculum in his new role as an assistant professor. “I am very happy that we are going to get more and more medical students, locally, to know more about that subspecialty and become more interested. It’s a chance to have more sleep medicine specialists. We don’t have enough in the country,” says Sayed. Read more HERE.
PHARMA COMPANY SEEKING NARCOLEPSY PATIENTS FOR ORAL MEDICATION TRIAL
We welcome the news of another pharma company working in the arena of rare sleep disorder research! Currently, Axsome Therapeutics is enrolling people with narcolepsy with cataplexy (only) for an investigational oral medication, AXS-12. The medication is being tested for effectiveness for the treatment of cataplexy and excessive daytime sleepiness for people with narcolepsy type 1 (with cataplexy).
Do you know someone who qualifies? More information HERE.
EXCITING NEWS! Jazz Pharmaceuticals announced that the U.S. Food and Drug Administration has approved Sunosi™ (solriamfetol) to improve wakefulness in adult patients with excessive daytime sleepiness associated with narcolepsy or obstructive sleep apnea. Sunosi is a wake-promoting drug and is the first dual-acting dopamine and norepinephrine reuptake inhibitor approved to treat excessive daytime sleepiness in adults. Sunosi is expected to be commercially available in the U.S. following the final scheduling decision by the U.S. Drug Enforcement Administration, which is typically within 90 days of FDA approval.
“With this approval, a new, daytime medicine that can provide sustained wakefulness throughout the day will be available for patients,” said Bruce Cozadd, Chairman and Chief Executive Officer of Jazz Pharmaceuticals. For further information, there are several links about solriamfetol (formerly known as JZP-110) research studies in the “Research Studies” section of our website (see HERE and HERE), and read Jazz Pharma’s press release HERE.