SomnusNooze
The Hypersomnia Foundation (HF) and its Board have just completed a week of very successful events in Baltimore to raise awareness of idiopathic hypersomnia (IH).
Isabelle Arnulf, MD, PhD Sorbonne University, Paris
First, the HF held its #BeyondSleepy Conference on June 2-3, attracting nearly 200 attendees. A number of very prominent physicians, pharmaceutical representatives and other professionals spoke on a variety of topics at the conference. (Click HERE for details). Some topics were new to the HF community, including issues relating to clinical trials, drug development, how anesthesia affects IH patients, and the differences in brain scans of people with IH versus people without IH.
Austin Letcher, MS CoRDS at Sanford
One big announcement at the conference was the fact that we now have over 1,200 persons enrolled in our HF patient registry at CoRDS (Coordination of Rare Diseases at Sanford)! This was of great interest to both researchers and pharmaceutical companies who were in attendance.
Panel Discussion: How can we help research move into development of new ways of diagnosing and treating IH?
Almost all of the presentations were recorded, and will be available (in an edited format) on the HF website in the future. The conference also provided opportunities for IH sufferers and their supporters to meet one another and to share their experiences. The HF Board wants to thank all of the conference sponsors, speakers, panelists, volunteers, and attendees who made this conference such an overwhelming success!
“It was wonderful to meet and talk with long-time supporters and donors, as well as people who were newly diagnosed or just becoming acquainted with HF for the first time. It was an exhilarating weekend of learning, exchanging stories, and sharing our determination to change the future for people with IH.” – Diane Powell, CEO/Chair, Board of Directors
“I think hearing about cutting-edge research and upcoming clinical trials of new drug candidates was very exciting for patients and families, and for us, too. It’s what has driven us forward as a patient advocacy group since HF was founded nearly five years ago.” – Cat Rye, CFO and Co-Founder
HF conference lunch with some of our wonderful volunteers!
The evenings of our HF conference were busy, too. On Friday evening, the HF hosted a casual meet-and-greet at a local pub, so that conference attendees could meet each other before the conference officially began on Saturday morning. On Saturday evening, the HF Board hosted a small reception, to thank our conference sponsors, presenters and panelists. On Sunday evening, the HF Board hosted a dinner for its Medical Advisory Board (MAB) and its Scientific Advisory Board (SAB), so that together we could discuss and prioritize the goals we hope to reach in 2018-2019.
HF Exhibit Booth at APSS SLEEP Meeting
However, the IH awareness campaign did not stop when the HF conference ended on June 3. The next day, the HF Board staffed an exhibit booth at the 3-day APSS (Associated Professional Sleep Societies) SLEEP meeting in Baltimore, which was attended by over 5,000 sleep professionals. The HF booth was one of the required stops in the APSS “Sleep Walking” campaign, which meant that those people wanting a chance to win the APSS grand prizes had to stop at the HF booth to get the HF stamp on their game cards. The HF Board used this opportunity to talk to numerous sleep medicine professionals, in order to increase awareness of IH and the HF, and to expand our online healthcare provider directory. Check back for later in the summer for all the new additions, and if your excellent sleep doctor is missing, please let us know!
While the HF Board staffed the APSS exhibit booth during the day on June 4-6, Board members were busy in the evenings, too. HF Board members attended various events in the evenings to discuss with sleep professionals and other nonprofit groups focusing on sleep disorders, how we can work together to increase public awareness of sleep disorders and encourage more research into sleep disorders. These discussions hopefully will lead to more collaborations with other nonprofit groups, as well as with those researchers and pharmaceutical companies who are interested in developing better treatments for IH.
We couldn’t do any of this work without our donors and supporters, and we are grateful to you all! Please help us continue to raise awareness of IH by donating to the Hypersomnia Foundation today. As a nonprofit organization, we are dependent on your donations to fulfill our mission of supporting people with IH.
HF Board Members at 2018 HF Conference