In Case You Missed It! – March 2020

Happy St. Patrick’s Day! If you’ve missed the latest news we’ve shared via social media, don’t worry, you’re in luck! Get up to date with this latest edition of “In Case You Missed It!”

  • CONGRATULATIONS: Dr. Todd Bishop receives funding through HF’s Research Award Program
  • PLEASE READ: HF statement on the Covid-19 pandemic
  • GET YOUR TICKETS NOW: Speakers announced for HF’s #BeyondSleepy 2020 Conference in Philadelphia
  • NOW RECRUITING: Clinical trial for a new medicine is seeking participants
  • SLEEP AWARENESS WEEK: HF joined the National Sleep Foundation promoting sleep health during the week of March 8–14
  • FREE WEBINAR: Workplace accommodations for those living with rare disease
  • COLLEGE SCHOLARSHIPS: The Jack & Julie Narcolepsy Scholarship Program is now accepting applications from U.S. high school seniors (deadline April 1)

So don’t worry if you’ve missed anything – we’ve got you covered!


DR. TODD BISHOP RECEIVES FUNDING THROUGH HF’S RESEARCH AWARD PROGRAM

The Hypersomnia Foundation is delighted to announce a second recipient of our Research Award Program, Todd M. Bishop, PhD, of the Veterans Health Administration (VHA), for an exciting study of idiopathic hypersomnia among U.S. veterans. We’re also pleased to add Dr. ur conference schedule (June 13–14 in Philadelphia), where he will share details of his research project!

Dr. Bishop and his research team will develop and validate a method for the accurate identification of cases of IH within electronic medical records. They will then gather data on the number of veterans with idiopathic hypersomnia, examine patterns of treatment, and explore other physical and health conditions (co-morbidities) among this population, with an emphasis on identifying suicide risk factors. Because the VHA maintains a detailed electronic medical record (EMR) and is the largest healthcare system in the U.S. (and one of the largest in the world), it provides a unique environment in which to study a rare disorder like IH and identify the largest sample to date of individuals diagnosed with IH.

Learning about the prevalence of idiopathic hypersomnia within the diverse veteran population could be a tremendous boost to elevating awareness of this disorder, and the treatment needs of these patients. Creation of this extensive IH dataset within the VA—which can continue to expand going forward—will facilitate collaboration with other researchers to help answer the numerous open questions about IH, including its etiology and best treatments,

Dr. Bishop received his PhD in clinical psychology from Syracuse University in 2014 after completing the APA-accredited doctoral internship at the Syracuse VA Medical Center. In 2016 he completed the VA Advanced Fellowship in Mental Illness Research and Treatment at the VA Center of Excellence for Suicide Prevention, where he is now an investigator. Dr. Bishop also holds appointments as Assistant Professor of Psychiatry at the University of Rochester Medical Center and Affiliated Research Investigator with the VA Center for Integrated Healthcare.

Thank you to our donors for making it possible to fund this exciting work!


THE HYPERSOMNIA FOUNDATION’S STATEMENT ON THE COVID-19 PANDEMIC

Like the rest of our community, the Hypersomnia Foundation is keenly aware of the Covid-19 pandemic, and is monitoring the situation closely. As of today, March 13, our HF conference, planned for June 13–14 in Philadelphia, is still on schedule—we have not cancelled our event.

This is due, in part, to the fact that the conference for sleep medicine professionals (SLEEP2020) which follows our HF conference on June 14–17, has not yet been cancelled.

SLEEP2020 draws over 5,000 sleep professionals, and many of the speakers at our HF conference will also be in attendance at SLEEP2020. We are relying on the actions of these medical professionals in making our decision not to cancel our event at this point.

It is everyone’s hope that the situation will stabilize by mid-June. However, the health and safety of our attendees and speakers is our top priority, so we will continue to closely watch developments, CDC recommendations, and government health advisories in the coming weeks.  Should we determine that we need to cancel our conference, we will do so promptly and will notify our community. And if we must cancel our HF conference, we will of course refund the HF conference registration fees for all attendees.

Now more than ever, we are grateful to be able to stay in touch with our community through social media, SomnusNooze, and email. The all-volunteer HF Board, which has always worked remotely, will continue our efforts to support our community, especially in these uncertain times.

–Diane Powell, Board Chair & CEO


GET YOUR TICKETS NOW! SPEAKERS ANNOUNCED FOR HF’S #BEYONDSLEEPY 2020 CONFERENCE IN PHILADELPHIA

Tickets are now on sale for HF’s #BeyondSleepy in Philadelphia Conference on June 13-14, 2020. Order your tickets before April 30 to get the incredible early bird price of $99. After April 30, tickets will be $125.

During this two-day event, top clinicians and researchers devoted to idiopathic hypersomnia and related disorders will present cutting-edge research on diagnosis, treatment, new medications and clinical trials. Experts will share information on ways you can advocate for your best care and help increase funding for rare sleep disorder research. The conference is being held at the Le Meridien Hotel, 1421 Arch St, Philadelphia, PA 19102. HF has a limited block of hotel rooms available for $169 per night.

If you are interested in volunteering, please email . Together we will press forward for more research, awareness and improved treatments of these rare sleep disorders.

Scheduled speakers include:

  • David Rye, MD, PhD, Emory University, USA
  • Lynn Marie Trotti, MD, MSc, Emory University, USA
  • Nathan Cross, PhD, Concordia University, Canada
  • Yves Dauvilliers, MD, PhD, University of Montpellier, France
  • Andrew Jenkins, PhD, Emory University, USA
  • Sanjeev Kothare, MD, Zucker School of Medicine at Hofstra/Northwell, USA
  • Jason Ong, PhD, Northwestern University, USA
  • Research updates from HF’s Research Award Program Grant Recipients Dr. Caroline Maness (2019 Awardee) and Dr. Todd Bishop (2020 Awardee)

Also featuring: Anjel F. Burgess, JD, an attorney specializing in disability law

And including breakout sessions on Living with a Rare Sleep Disorder & Getting Support, with:

  • Diana Kimmel, founder of the Hypersomnia Alliance and the “Snooze Cruise
  • Sarah Beazley, HF Board member and Patient Advocate
  • Diane Powell, LCSW, HF Board Chair/CEO

CLINICAL TRIAL FOR IH NOW RECRUITING

If you have idiopathic hypersomnia, you may be able to help with research to develop a new treatment option. The SPARKLE 2002 Study is testing an investigational drug (TAK-925) to see if it could potentially be a safe and effective way to help increase wakefulness for people with idiopathic hypersomnia. This pharmacokinetic and safety study of TAK-925 in participants with IH is now recruiting in the U.S. adults age 18-75 with IH (who first experienced symptoms between age 10–30). The total amount of time you may be involved in the study is up to 43 days. You will be reimbursed for your time and travel.

For more information about these and other clinical trials, visit the “Research Studies/Clinical Trials” section of our website.


SLEEP AWARENESS WEEK: MARCH 8–14

How many alarms do you set? People with IH set a lot of them, often buying extra loud alarms in hopes of waking on time for a job, class or appointment. If you struggle to wake up every day and regularly suffer from excessive daytime sleepiness—despite sleeping fully at night—you might have a sleep disorder. During “Sleep Awareness Week,” we encouraged people living with a rare sleep disorder, their families, and caregivers to learn more about IH by visiting our website, sharing our FREE resources (like our HINT test and Self-Advocacy Tips brochure), and talking with their doctors.

Check out some of our Facebook posts:


FREE WEBINAR “WORKING RARE: EMPLOYMENT CONSIDERATIONS FOR PEOPLE LIVING WITH RARE DISEASES”

How do employees with rare diseases get the job done while also managing their health? What rights do rare patients have and what resources are available to help them perform their duties? How can employers create a supportive environment for employees with rare conditions?

The National Organization for Rare Disorders (NORD) is hosting a free webinar on Wednesday, March 25 at 2:00–3:00 p.m. EST (Note: if you can’t make it at that time, register anyway, as NORD will likely record the webinar and can send you a link). Learn about workplace accommodations for those living with rare disease. Hear perspectives from a working rare disease patient, a representative from the New England Americans with Disability Act Center, and a Human Resources Director.

Help spread awareness of the impact of living with a rare sleep disorder by sharing this webinar with fellow patients, caregivers, advocates and HR personnel.


SCHOLARSHIPS AVAILABLE FOR HIGH SCHOOL STUDENTS WITH IH AND NARCOLEPSY

Applications are being accepted for Project Sleep’s 7th annual Jack & Julie Narcolepsy Scholarship supporting students with narcolepsy and idiopathic hypersomnia while fostering awareness in high school and collegiate settings.

In 2020, Project Sleep plans to award 15 scholarships of $1,000 each, including ten scholarships for students with narcolepsy and five scholarships for students with idiopathic hypersomnia, supported through a partnership with the Hypersomnia Foundation.

High school seniors living with narcolepsy or idiopathic hypersomnia planning to attend four-year universities in the United States are encouraged to review the eligibility criteria and apply.

The deadline for applying is April 1, 2020. Please share with local schools, doctor’s offices, and sleep centers.

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