Happy Halloween! If you’ve missed any of the latest news we’ve shared through our social media, don’t worry! Get up to date with this edition of “In Case You Missed It!”
- REGISTER TODAY: Registration open for HF’s free virtual event “Reaching Every Patient: A Health Equity Conversation.”
- FREE VIRTUAL CONFERENCE: Registration open for Canadian Sleep Society’s virtual conference October 28-30.
- U.S. ADVOCACY ALERT: Tell Congress to protect the Orphan Drug Tax Credit.
- FREE RESOURCES: Download HF’s Education Essentials for students with sleep disorders.
- CoRDS REGISTRY: Register or update your information today!
Don’t worry if you’ve missed anything. We’ve got you covered!
REGISTRATION OPEN FOR HF’s VIRTUAL EVENT—”REACHING EVERY PATIENT: A HEALTH EQUITY CONVERSATION”
Join us on Saturday, November 13th from 12:00-2:00 p.m. (EST) for the Hypersomnia Foundation’s FREE virtual event – “Reaching Every Patient: A Health Equity Conversation.”
Let’s talk about how we can help everyone with IH and related sleep disorders get proper diagnosis and treatment! Many people with these sleep disorders face diagnosis and treatment delays. Some don’t seem to get a diagnosis at all! We’ve noticed that many communities are vastly underrepresented in patient registries and clinical trials—why is this? What are the barriers?
When everyone is diagnosed, our community not only grows, but becomes stronger in our advocacy for more research and improved treatments!
REGISTER TODAY and join us to listen, learn and engage in this event. We’ll discuss a few areas of common interest for people with sleep disorders, share patient stories, resources, and talk about how we can all play a role in building a wider community.
This event is hosted by HF’s Diversity and Health Equity Task Force.
What’s it like to participate in a clinical trial? Do you have questions? Just curious?
Christina Brundage, Hypersomnia Foundation Volunteer and IH Patient Advocate, shares her personal experiences in “Christina’s Story: Volunteering for IH Clinical Trials”. This video is an excerpt from “The Research Continues” – an HF Virtual Hypersomnia Educational Event we hosted in October 2020. Then, check out which clinical trials are currently recruiting on our Research Studies page.
The Hypersomnia Foundation is thrilled to collaborate with the AASM Foundation on hypersomnia research grants! The AASM Foundation is committed to improving patient-centered diagnosis and care for all patients with sleep disorders. As announced by the AASM Foundation, “We’re excited to collaborate with the Hypersomnia Foundation in funding for the 2022 Strategic Research Grant: Treatment of Central Disorders of Hypersomnolence and applications for the Strategic Research Grant: AASM Strategic Plan Goals that focus on diagnosis of hypersomnolence disorders.”
Visit the AASM Foundation website to learn more.
Takeda Pharmaceutical Company Limited (“Takeda”) has announced that a safety signal has emerged in Phase 2 studies of TAK-994, a potential narcolepsy treatment. As an immediate precautionary measure, the company has suspended dosing of patients and has decided to stop both Phase 2 studies early. “Ensuring the safety of patients participating in clinical studies is of the utmost importance as we strive to develop transformative medicines,” said Sarah Sheikh, Head Neuroscience Therapeutic Area Unit at Takeda.
Read the complete announcement HERE.
REGISTRATION OPEN FOR FREE VIRTUAL SLEEP CONFERENCE
The Canadian Sleep Society (CSS) is hosting a virtual conference October 28-30, 2021. In addition to the main scientific program, it will also feature patient engagement sessions for the public, which will be fully accessible online for FREE. Of particular interest to people with narcolepsy or idiopathic hypersomnia is the Narcolepsy/Hypersomnia Engagement Session on Friday, October 29.
Dr. Jason Valerio, a neurologist and sleep specialist at the University of British Columbia sleep disorders clinic and a movement disorders specialist at the Pacific Parkinson’s Research Centre, will lead a session in English from 2:00-2:55 p.m. ET.
Dr. Alex Desautels, neurologist, researcher and professor in the Department of Neurosciences at the Université de Montreal, will lead a session in French from 3:00-3:55 p.m. ET.
Each session will feature a formal presentation regarding diagnosis, medication, disease course, tips and more followed by a 25-minute Q&A session during which patients with narcolepsy and/or IH will be able to ask questions.
Other session topics include: “Sleep and Shift Work,” “Sleep Apnea,” “Sleep, Sport, Performance,” and “Insomnia, Burnout and the Road to Building Resilience in Health Workers.”
Go to the HF “Events” page for conference details and registration.
Schrödinger and Centessa Pharmaceutical, together with subsidiary Orexia Therapeutics, have entered into an exclusive collaboration focused on the discovery of novel therapeutics targeting the orexin-2 receptor (OX2R), which is known to play a role in a broad spectrum of sleep disorders, including narcolepsy.
“While prevailing treatment approaches only address the symptoms associated with narcolepsy type 1 (NT1), we believe orexin agonists offer a disruptive approach, with the capacity to address the underlying pathology of the disorder. Orexia’s utilization of OX2R stabilized receptors (StaR technology) provides the foundation for R&D which could significantly benefit patients with NT1,” says Saurabh Saha, MD, PhD, Centessa CEO.
Read more in a recent online edition of Sleep Review magazine.
U.S. ADVOCACY ALERT—TELL CONGRESS TO PROTECT THE ORPHAN DRUG TAX CREDIT
The House Ways and Means Committee recently passed their portion of the Build Back Better Act, which included language to amend the Orphan Drug Tax Credit (ODTC) in ways that would severely undermine efforts to ensure more patients have access to a safe and effective drug for their rare condition.
Given that 90% of rare diseases lack an FDA-approved treatment, these changes could have a devastating impact on the millions of rare disease patients who continue to hope for a safe and effective therapeutic option to treat their specific condition.
Contact your legislators NOW and ask them to leave the proposed changes to the Orphan Drug Tax Credit out of the final version of the Build Back Better Act so more rare disease patients can one day have access to an FDA approved treatment.
FREE RESOURCES FOR STUDENTS WITH SLEEP DISORDERS
We were happy to recognize Student Sleep Health Week! Organized by the American Academy of Sleep Medicine (AASM) and supported by a resolution introduced in the U.S. House of Representatives, Student Sleep Health Week drives awareness of the importance of healthy sleep for students of all ages to learn, grow and thrive during the school year.
Visit the AASM website for more information and links to multiple resources to help teachers, school nurses, counselors, and coaches raise awareness of the importance of sleep for students.
Also, download and share the Hypersomnia Foundation’s FREE resources for students with sleep disorders:
- Education Essentials for Students With Idiopathic Hypersomnia—A series of guides for students in K-12 and higher education that cover topics such as how to request accommodations, what assistive technology is available, how to navigate the college admissions office and counseling services, and tips for parents of students who have IH.
- HINT Test for Sleepy Students—A quick four-question screening test, to help school professionals, primary care providers, and others identify students who might have a sleep disorder and may need to see a sleep medicine expert for further evaluation.
Together we can help meet the educational needs for students by providing information, direction, and support.
CoRDS REGISTRY UPDATE
As of September 2021, the Hypersomnia Foundation Registry at CoRDS (Coordination of Rare Diseases at Sanford) has over 3,000 participants and we continue to grow by about 50 participants per month!
If you have been diagnosed with idiopathic hypersomnia, Kleine-Levin syndrome, narcolepsy, or hypersomnia associated with certain other conditions, you can make an important contribution to hypersomnia research by joining the Hypersomnia Foundation’s Registry at CoRDS. Sharing information about your symptoms, your previous treatments, and your diagnostic journey holds the key to solving this complicated puzzle of rare sleep disorders by providing a valuable dataset for researchers to study.
You hold the key to solving this complicated puzzle of rare sleep disorders.