In Case You Missed It! – September 2019

In Case You Missed It! – September 2019

As autumn approaches, our schedules quickly fill up! 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!” So don’t worry if you’ve missed anything – we’ve got you covered!


JOIN US AS WE GET #BEYONDSLEEPY IN CHICAGO ON OCTOBER 19!

We will be hosting a Hypersomnia Educational Meeting in Chicago on Saturday, October 19, 2019 from 10 AM to 3 PM at the Sheraton Suites Hotel. Tickets are $25 and include lunch. The first 75 registrants will receive a free “Getting #BeyondSleepy in Chicago” t-shirt! Tickets are selling quickly – Register today!

We also will be hosting an informal meet-and-greet for all registered attendees the evening of October 18. Details will be sent to all registered attendees. We have also secured a discounted rate of $115 at the Sheraton Suites Chicago for event attendees. A limited number of rooms are available for Friday Oct 18 and/or Saturday October 19. Reservation link is on our event registration page.


SAVE THE DATE! WE WILL BE HOLDING OUR 2020 HF CONFERENCE IN PHILADELPHIA IN JUNE!

Our 2020 Hypersomnia Foundation Conference will be in Philadelphia on June 13-14, 2020. We will be gathering top sleep medicine researchers and physicians who will discuss cutting-edge research on diagnosis and treatments and share information on new medications and clinical trials. This two-day event kicks off with a free social “Meet and Greet” on the evening of Friday, June 12. Keep checking our event page for more details!

 


FREE EVENT IN VANCOUVER, SEPTEMBER 21-22, FOR PEOPLE WITH SLEEP DISORDERS

World Sleep Society is collaborating with several patient sleep organizations to host “Sleep Expo 2019” – their first-ever, international summit for people with sleep disorders. This free event will take place from 8:30 a.m. – 4:30 p.m. on Saturday, September 21 through Sunday, September 22, 2019 in Vancouver, Canada.

Saturday’s program, “Understanding Narcolepsy and Hypersomnia: Insights and Perspectives,” is being presented by Wake Up Narcolepsy in collaboration with the Hypersomnia Foundation. Lectures, speaker panels, and Q&A sessions are scheduled throughout the event.

Registration to attend Sleep Expo 2019 is FREE and open to the public, and will provide people with sleep disorders unmatched opportunities to learn about and experience scientific ideas and new research in sleep medicine with the aim of advancing sleep health worldwide. Register HERE!


DR. LYNN MARIE TROTTI RECEIVES $2.1 MILLION GRANT FOR HYPERSOMNIA RESEARCH

The National Institute of Neurological Disorders and Stroke awarded Dr. Lynn Marie Trotti, Emory neurologist and Chair of HF’s Medical Advisory Board, a $2.1 million grant for hypersomnia research. Now THAT is news to give us all a boost! Read more about the grant and research HERE.

 

 

 


EXPANDED RESEARCH STUDY NEEDS PARTICIPANTS WITH IH OR NARCOLEPSY

Dr. Thanh Dang-Vu, a leading neurologist and sleep researcher at Concordia University in Montreal (and a member of our Medical Advisory Board) and his colleagues are seeking participants with IH or narcolepsy (either with or without cataplexy) for their expanded research study involving brain imaging. They are offering compensation for travel and participation. For more information about this and other currently-recruiting research studies (including clinical trials), please visit the “Research Studies” section of our website.

Dr. Dang-Vu will be speaking at our Education Meeting in Chicago on October 19; you may also remember Dr. Dang-Vu as one of the speakers at our 2018 HF Conference in Baltimore.


FREE CAMP FOR KIDS WITH IH

Only two spots left for a family retreat weekend in Scottsville, Kentucky, for kids aged 5-17 with idiopathic hypersomnia and related sleep disorders, and their families! Camp is October 11-13 on the beautiful state-of-the-art campgrounds at The Center for Courageous Kids! From a former camper: “I think the Center for Courageous Kids is important because it gives kids with sleep disorders and their parents a friendly environment to be with each other and to just be themselves.” Connor, 15 (Source: Wake Up Narcolepsy). Families cover their own travel expenses, but the camp is FREE. Sign up now – there are just two places left for kids with IH and their families! Let’s get #BeyondSleepy at camp!


MEDICATION APPROVED FOR EXCESSIVE DAYTIME SLEEPINESS IN ADULTS WITH NARCOLEPSY

Harmony Biosciences announced the FDA approval of WAKIX (pitolisant), a first-in-class medication for the treatment of excessive daytime sleepiness in adult patients with narcolepsy. This approval of a new treatment for narcolepsy is another indication of the increasing interest and focus on studying disorders of hypersomnolence, which is good news for the rare sleep communities! Read more HERE.


HYPERSOMNIA FOUNDATION HOSTING AN INTERNATIONAL INVESTIGATIVE GROUP FOCUSED ON IH

The Hypersomnia Foundation will be hosting an International Investigative Group of top researchers for a focused discussion on idiopathic hypersomnia! Chaired by Hypersomnia Foundation Medical Advisory Board Members Dr. David Plante and Dr. Lynn Marie Trotti, this roundtable discussion on idiopathic hypersomnia will be held at the World Sleep Congress in Vancouver in September – more evidence of an exciting rise in the level of interest in understanding IH.


HF ATTENDED RARE DISEASE INNOVATION AND PARTNERING SUMMIT

Boston’s raw and wet weather did not prevent an impressive turnout at the June 2019 “Rare Disease Innovation and Partnering Summit” sponsored by the Center for Business Intelligence & the EBD Group. The Summit’s focus on moving the curative process forward, the success of orphan products, and patient advocacy underscored the power of identifying and collaborating with relevant stakeholders. The Hypersomnia Foundation was represented among the participants, and one takeaway was being able to broker a connection between Balance Therapeutics and Amplity Health, which finds patients for medical trials. Raising awareness to get #BeyondSleepy! Pictured here is HF Board member Mary King with Yesenia Cortes, the Customer Service Coordinator for the EBD Group.


Andrew PowellTHE HYPERSOMNIA FOUNDATION IS DELIGHTED TO WELCOME ANDREW POWELL AS OUR INDUSTRY OUTREACH OFFICER

Andrew has had a successful career in the biopharmaceutical industry and is responsible for the Hypersomnia Foundation’s outreach to companies that share our commitment to developing better medicines to treat disorders of hypersomnolence. Learn more HERE about Andrew and his role in helping us get #BeyondSleepy!

 



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