In Case You Missed It! – June 2019
Keep up to date with the news we’ve shared via social media with the sleep disorder community in this month’s “In Case You Missed It!”
- SUCCESS: Read about the recently approved legislation that will provide important funding for sleep research.
- CONGRATULATIONS: Meet the recipients of the Jack & Julie Narcolepsy Scholarship Program, including 5 students with IH, funded by the Hypersomnia Foundation.
- INTERESTING REPORT: See the results of a recent study showing how idiopathic hypersomnia diagnoses are on the rise.
- WORTH SHARING: Get some helpful advice on how to support a friend or family member living with IH.
So don’t worry if you’ve missed anything – we’ve got you covered!
LEGISLATION APPROVED SUPPORTING SLEEP COMMUNITY PRIORITIES
Many thanks to Project Sleep and patient advocates across the country, who asked their State Representative to sign Congressman Adam Schiff’s bipartisan letter supporting increased NIH funding for sleep disorders research and sleep awareness. You spoke and Congress listened!
The House Appropriations Committee on Labor, Health and Human Services, and Education advanced a key bill that would provide important funding for sleep research and education projects in Fiscal Year 2020. The bill includes a total of $41.1 billion in funding for the National Institutes of Health (NIH), an increase of $2 billion over FY 2019. Of specific interest to our community, the Committee published a recommendation on sleep disorders. With this additional congressional focus, we should expect to see meaningful investment in specific sleep conditions moving forward.
Thank you for speaking up and advocating for increased research and funding! Read more about it HERE.
SCHOLARSHIPS AWARDED TO FIVE STUDENTS WITH IH
CONGRATULATIONS to these five high school seniors! The Hypersomnia Foundation is proud to support each of you with a $1,000 scholarship as you prepare for college: Caroline from Alpharetta, GA; Samuel from Peoria, AZ; Sydney from Schofield, WI; Hanna from Winter Park, FL and Aaron from Huntsville, AL.
Thank you, Project Sleep, for inviting us to support these students with idiopathic hypersomnia, through the Jack & Julie Narcolepsy Scholarship Program! READ their stories HERE and congratulations to ALL of the scholarship winners!
HOW TO SUPPORT SOMEONE WITH IH
How do you support a friend or family member with a rare disease? It can be difficult being friends with someone who is chronically ill. They often have to cancel on you, or they might be exhausted at the start of an event and practically have to be carried out at the end. You may not know what to say to them or how to show your support throughout their good and bad days. HERE is some helpful advice on how to support a friend or family member living with #IH or another rare disease.
IDIOPATHIC HYPERSOMNIA DIAGNOSES ON THE RISE
Are idiopathic hypersomnia diagnoses increasing? Yes, as indicated by a 33.8% increase in IH insurance claims from 2013 to 2016. Narcolepsy claims increased 13.8% over the same time period. Read more about sleep disorder prevalence and testing trends HERE.
FIBROMYAGIA SYNDROME MAY SOMETIMES BE CAUSED BY A SLEEP DISORDER
Is Fibromyagia Syndrome a myth? No, but in some cases, it just might be a sleep disorder. Dr. Gerard Meskill, a Stanford-trained sleep medicine specialist, explains how sleep disorders can lead to fibromyalgia. Read about it HERE.
HEART HEALTH AT RISK WITH TOO MUCH SLEEP
Too much and too little sleep is linked to increased cardiovascular risk, according to a study recently published in the “European Heart Journal”. Not everyone has a choice about how much they sleep – but it’s important to be aware of possible health risks and discuss them with your doctor. Read more HERE.
PODCAST FEATURES PEDIATRIC IH AND NARCOLEPSY
Great podcast from Hypersomnia Foundation Medical Advisory Board member Dr. Kiran Maski – assistant professor at Harvard Medical School and a child neurologist and sleep medicine specialist at Boston Children’s Hospital. In Episode 4 of Wake Up Narcolepsy’s weekly podcast series “Narcolepsy 360”, Dr. Maski shares her passion about practicing sleep medicine, improving diagnostic delays and the screening tool she has developed to help identify children and adolescents with narcolepsy and idiopathic hypersomnia, with hopes to bring awareness about CNS hypersomnia conditions to children, parents, teachers, school nurses, and healthcare providers. Listen to Dr. Maski HERE.