HF had a very busy fall, attending numerous conferences and events. We’re very excited to have been able to expand our efforts to reach more clinicians, researchers, educators, and people affected by idiopathic hypersomnia and related disorders. We couldn’t do it without our donors, and we appreciate each and every one of you helping us with our mission. As we near the end of our 5th anniversary year, we’d like to share with you some of the exciting details of these events, many of which you may have seen in our social media. Stay tuned as our 2020 events unfold, and mark your calendars now to join us this June 13-14 for the HF Conference in Philadelphia!
SOCIETY OF BEHAVIORAL SLEEP MEDICINE (SBSM)
Birmingham, AL, September 2019
The goal of the SBSM is to bridge the gap between research and clinical practice. This past September, they hosted their first annual conference in Birmingham, with the theme “Focusing on Advancing the Science of Behavioral Sleep Medicine and Its Impact on Population Health.” At the invitation of the SBSM, HF provided a program on idiopathic hypersomnia. Dr. Lynn Marie Trotti, Emory neurologist, researcher and Chair of HF’s Medical Advisory Board, presented a Board Review as well as one of the Special Lectures, “Hypersomnia: Clinical Considerations.” HF Board Member Sarah Beazley organized and moderated a patient panel: “Living with Hypersomnia.” Thank you to panelists Diana Kimmel, Megan Mallare and Rebecca King! The lively panel discussion was praised by conference participants, who noted that it was “very refreshing” and “informative” to hear about IH from patients’ perspectives. Sarah and fellow HF Board Members Cat Rye and Rebecca King networked and distributed educational materials. SBSM attendees were also able to earn CME (continuing medical education) credits for correctly answering questions about IH and related disorders designed by HF and based on these presentations!
AAFP FAMILY MEDICINE EXPERIENCE (FMX) CONFERENCE
Philadelphia, PA, September 2019
The AAFP hosts Family Medicine Experience Conferences where medical professionals can extend their learning and earn CME (continuing medical education) credit. HF volunteer Nicholas Tu and Board member Betsy Ashcraft attended this past September’s event, spreading awareness of IH, narcolepsy and other rare sleep disorders. More than 5,000 people attended this event, including medical professionals, family physicians and medical students.
As part of HF’s new initiative, Advancing the Front Line, we are reaching out to the professionals who are most likely to encounter sleepy people! Earlier this year, we attended several other meetings and conferences held for primary care doctors and educators: 1) AAFP National Conference; 2) American School Counselors Association conference; and 3) American College Health Association conference. We worked to raise awareness, including sharing handouts of our new HINT test to help improve diagnosis. The more these doctors and educators know, the quicker a correct diagnosis could be made.
WORLD SLEEP CONGRESS
Vancouver, B.C., September 2019
At the 2019 World Sleep Congress, the Hypersomnia Foundation sponsored the first exploratory meeting of an International Hypersomnia Investigative Group. This closed-door discussion among some of the top sleep researchers in the world (including those pictured here, bottom right, and others who had expressed interest but were unable to attend) was the first in a series of meetings to grapple with the issues of studying and treating IH.This is exciting news for our community – stay tuned to HF for future updates!
At the World Narcolepsy Day Forum held during the World Sleep Congress’s “Sleep Expo 2019,” HF Board Member Rebecca King spoke about the increased diagnosis prevalence of both narcolepsy and idiopathic hypersomnia. Thank you Rebecca for a successful and informative event!
We were also very honored to be a part of Project Sleep’s World Narcolepsy Day Pronouncement at Sleep Expo 2019! There were so many great insights shared by leading sleep researchers and physicians, including Dr. Kiran Maski from our Medical Advisory Board, Scientific Advisory Board Chair Dr. David Rye, Medical Advisory Board Chair Dr. Lynn Marie Trotti, and Board Member and Advocacy Chair Rebecca King. You can watch the entire announcement video HERE.
CAMP AT CENTER FOR COURAGEOUS KIDS
Scottsville, KY, October 2019
This past October, HF was thrilled to sponsor camperships for children ages 5 through 17 with IH and their families at the Center for Courageous Kids’ Camp in Scottsville, Kentucky. This center is a 168-acre not-for-profit camp that aims to inspire, empower and enhance the lives of children with serious illnesses while they are at the camp and in their daily lives outside the camp.
The children had a weekend filled with horseback riding, archery, bowling, arts and crafts, and more! Parents had the opportunity to attend informational sessions and meet other parents of children with sleep disorders for peer-to-peer discussions. Attendance was free! WUN funded camperships for children with narcolepsy and the Hypersomnia Foundation funded camperships for children with IH. Families were responsible for travel expenses only. Lindsay Jesteadt of WUN and HF Board members Diane Powell and Sarah Beazley joined the children at the Center for Courageous Kids for a wonderful weekend meeting and fun with kids with IH and narcolepsy!
HF EDUCATION DAY
Chicago, IL, October 2019
HF’s Chicago Education Day was one of a series of patient education meetings that HF is holding in 2019 and beyond. We hope that holding one-day meetings in a variety of locations will allow more people with IH and related disorders, as well as their supporters, to take part in HF outreach and awareness events. Many thanks to Dr. David Rye, Dr. David Plante, Dr. Thien Thanh Dang-Vu, and HF Board members Rebecca King, Amy Desmarais and Sarah Beazley for speaking at our first Midwest HF Educational Meeting! Over 100 people attended this event. With your support and donations we will be able to host further educational meetings, increasing awareness of IH and related sleep disorders.