In Case You Missed It! – May 2020

In Case You Missed It! – May 2020

During this unprecedented time, we are grateful to be able to stay in touch with our community through social media, email, and SomnusNooze. If you’ve missed any of the latest news we’ve shared, don’t worry! Get up to date with this latest edition of “In Case You Missed It!”

  • MUST WATCH: HF releases new video presentations from Baltimore Conference
  • FREE WEBINAR: Learn what is being done to detect and combat COVID-19
  • GREAT INTERVIEW: Dr. Emmanuel Mignot talks about IH, N1, and N2
  • REGISTER NOW: Virtual conference planned for rare disease community
  • BE PREPARED: Get your free IH Medical Alert ID Card
  • THANK YOU: HF salutes the nurses and organizations helping during this crisis

So don’t worry if you’ve missed anything. We’ve got you covered!


TWO NEW VIDEOS FROM THE HF CONFERENCE IN BALTIMORE

We are excited to release two video presentations from the Hypersomnia Foundation Conference in Baltimore.

In Dr. Thanh Dang-Vu’s presentation, “Structural and Functional Brain Alterations in Idiopathic Hypersomnia”, he explains the results of his groundbreaking research into brain imaging studies of people with IH and answers the question, “Do people with IH have different brains than people without IH?”

Watch Dr. Thanh Dang-Vu’s video and download his accompanying PowerPoint slides.

 

In Dr. Kiran Maski’s presentation, “Diagnostic Challenges of Pediatric Hypersomnia Disorders”, she discusses the challenges in diagnosing narcolepsy and idiopathic hypersomnia, particularly in pediatric populations and the novel diagnostic procedures and sleep neurophysiological biomarkers that could improve diagnostic accuracy for these conditions.

Watch Dr. Maski’s video and download her accompanying PowerPoint slides.


LEARN WHAT IS BEING DONE TO DETECT AND COMBAT COVID-19

Watch the National Organization for Rare Disorders, Inc. (NORD) free webinar on the status of what is being done to detect and combat COVID-19. Infectious disease specialist and public health epidemiologist, Dr. Rishi Desai, addresses the status of coronavirus testing, drugs under investigation as potential treatments and the outlook for a vaccine. This webinar is perfect for patients, caregivers, advocates and the public.


DR. EMMANUEL MIGNOT DISCUSSES IH, N1 and N2

We are happy to share this great interview by Julie Flygare from Project Sleep with Dr. Emmanuel Mignot.

Dr. Mignot gives an overview of narcolepsy type 1 and the link to the flu, provides an explanation of the differences between the flu and viruses, and discusses the challenges and risks of vaccines. About 50-minutes into the interview, Dr. Mignot talks about IH and N2, sharing the difficulties in diagnosis, the emerging interest by researchers to re-evaluate their approach to these conditions, and the new treatments and technologies on the horizon for all hypersomnias.

Thank you Julie and Project Sleep for providing this wonderful interview with Dr. Mignot!


REGISTRATION OPEN FOR RARE DISEASE VIRTUAL CONFERENCE

Registration now open for RARE ON THE ROAD, a virtual interactive conference/webinar for rare disease community members who want to tell their rare disease story, make an impact in the lives of others, and connect locally with fellow rare disease community members.

Hosted by Global Genes and the EveryLife Foundation for Rare Diseases, this two-part event aims to empower attendees to build their storytelling skill set, engage in advocacy, and network with their local rare disease community.

Part I: Interactive Webinar – Tuesday, June 23, 11:00 a.m.  – 1:30 p.m. ET  / Participate in interactive tutorials on how to tell their rare story and how to get involved in advocacy. Event will feature special guest speakers, including a rare disease patient and a policy expert.

Part II: Rare Chats – Wednesday, June 24, 11:00 a.m. – 12:00 p.m. ET / Meet local rare disease community members with this unique video chat experience. This session will focus on issues and resources specific to California, Louisiana, Minnesota, and North Carolina, but will have useful information for other regions as well.

Space is limited and is first come, first served. 


DO YOU HAVE AN IH MEDICAL ALERT ID CARD?

Our Medical Alert Card is designed to allow a person with IH to list their regular medical information (including their IH medications), and to educate emergency medical personnel about the neurological disorder of idiopathic hypersomnia and its potential for interfering with anesthesia and other drugs. Since many people (including medical personnel) are not familiar with IH, the information about #IH on this Card may prevent possible problems in a medical emergency.

Download your FREE Medical Alert ID Card or email and we will mail one to you.


THANK YOU TO THOSE HELPING DURING THIS CRISIS

From everyone at the Hypersomnia Foundation, #ThankYouNurses for your unwavering support, hard work and compassion!

May 5th was “Giving Tuesday Now,” a day of giving dedicated to nonprofit organizations most impacted by the novel coronavirus Covid-19. We at the Hypersomnia Foundation did not ask for donations but encouraged our community to support those nonprofit organizations that desperately need our help right now. As always, we are grateful for the generosity of our longtime supporters and we hope that our community is staying healthy during this pandemic.



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