HF Is Raising Awareness of IH from Coast to Coast (and Down South, too!)

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Have you seen us? The Hypersomnia Foundation has been here, there and everywhere lately, raising awareness of idiopathic hypersomnia (IH) and related sleep disorders! From Boston to Seattle, from Denver to San Antonio, we’ve been talking to medical professionals, school counselors, and people with IH, raising awareness of rare sleep disorders. And we’re not done yet – in the next two months, we’re headed to Kansas City, Birmingham, Philadelphia and Vancouver to educate even more medical professionals about IH.

Earlier this year, the Board of the Hypersomnia Foundation voted to reach out to professionals in the educational and medical fields who may not know very much about IH and related sleep disorders. These professionals, who are often the very first professionals to encounter students and patients who are excessively sleepy during the daytime, receive very little (if any) training about sleep disorders. So our mission was clear – to educate these “gatekeepers” about IH and other sleep disorders, so that their sleepy students and patients might be properly screened and diagnosed.


Hypersomnia Foundation Board President, Diane Powell discusses #IH at the American College Health Association conference in Denver, Colorado.

Our first stop was the American College Health Association Annual Meeting in Denver at the end of May. The HF had a booth on the exhibit hall, and nearly 2,000 college health professionals were in attendance. HF Board Chair Diane Powell and HF Corporate Outreach Officer Andrew Powell attended this 4-day event, whose theme was “Elevating Well-Being.”

A week later, the HF travelled to San Antonio, site of the 2019 SLEEP meeting, the annual meeting of the APSS (Associated Professional Sleep Societies), a joint meeting of the American Academy of Sleep Medicine and the Sleep Research Society. This meeting, the largest meeting devoted exclusively to sleep medicine and sleep research, was attended by more than 20,000 sleep medicine professionals from around the world – and we talked to most of them from our HF booth on the exhibit hall! During this 4-day event, the HF also met with other nonprofit organizations focused on sleep disorders, and talked with representatives from pharmaceutical companies who are conducting clinical trials and other research on sleep disorders.

Thank you Boston for a successful American School Counselors Association Conference where we were able to educate K-12 counselors about #IH and how to help sleepy students. Every counselor we spoke with said they had at least one or two students who exhibited characteristics of #IH.

Then, at the end of June, the HF had two simultaneous events, on opposite coasts. On June 29-July 2, the HF attended the American School Counselors Association meeting in Boston. This annual meeting, whose theme was “Revolutionary Ideas,” was attended by over 3,600 school counseling professionals, who work with students ranging from elementary school up through college. An HF Board member working at our exhibit booth received confirmation that our presence there was very needed: “A special education teacher attended the event with a family member who is a school counselor, and both were pleasantly surprised to see our exhibit table. The special education teacher talked about having IH, a sibling having narcolepsy, and another sibling being affected by symptoms as well. The free resources on our HF website were a welcome surprise to them!”

Over 100 people attended the Hypersomnia Foundation Educational Meeting in Seattle, Washington.

And over in Seattle on the same day (June 29), the HF hosted its first Patient Education Meeting – and its first ever event on the West Coast. This sold-out event featured prominent sleep medicine experts – including Dr. David B. Rye of Emory University (Chair of the HF’s Scientific Advisory Board) and Dr. Flavia Consens of the University of Washington – as well as leaders in the patient advocacy and sleep research/legislative fields, including Julie Flygare of Project Sleep. A number of the 100 attendees at this Meeting had just disembarked from the 2019 SnoozeCruise, which was sponsored by the Hypersomnia Alliance, a patient advocacy group for people with IH.

But we’re not finished yet! At the end of July, the HF will be attending the American Association of Family Physicians (AAFP) National Conference in Kansas City. This event, designed for medical students and family medicine residents, is expected to host over 2,500 of these young medical professionals. We’ll be there to raise awareness of rare sleep disorders in these young doctors, who receive – on average – only 3 hours instruction about sleep while they are in medical school.

We take a break in August, and then we hit the ground running in September, when we will be attending three different events to raise awareness. First, on September 12-15, we’ll be going to Birmingham to attend the first Annual Scientific Meeting of the Society of Behavioral Sleep Medicine (SBSM), where the HF has accepted an invitation to work with the SBSM on an educational program about IH. Dr. Lynn Marie Trotti, Chair of the HF’s Medical Advisory Board, will provide two lectures to the medical professionals, and HF Board Member Sarah Beazley will present and facilitate a patient impact panel to help attendees better understand the life-changing symptoms of IH. Next up will be the World Sleep Congress in Vancouver, British Columbia, where the HF will have a prominent role, including hosting educational sessions and forums in cooperation with Wake Up Narcolepsy. From September 20 through September 25, HF Board members will be in Vancouver, meeting and speaking with sleep professionals from around the world. And during this same time period, other HF Board members will be in Philadelphia, attending the “Family Medicine Experience” meeting of the American Association of Family Physicians (AAFP). Generally, family physicians are among the first medical professionals whom sleepy people consult about their sleep problems, and we want all family physicians to consider the possibility of a sleep disorder when diagnosing their sleepy patients. More than 5,000 family physicians are expected to attend this September 24-28 event in Philadelphia, and we are determined to talk about IH with every single one of them!

Stay tuned for news about even more IH awareness events! Check out our Events page, and follow us via SomnusNooze, Facebook, and Twitter. And consider making a donation today to the Hypersomnia Foundation, so that we can continue raising awareness of IH and related sleep disorders all over the globe!

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