We are grateful to be able to keep in contact 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!”
- REGISTER TODAY!: The Hypersomnia Foundation is hosting a FREE Virtual Event—“The Research Continues”
- MUST READ: Research published from the HF International Patient Registry at CoRDS
- WELCOME!: HF welcomes two new Board members!
- CONGRATULATIONS!: Dr. David Plante receives AASM 2020 Strategic Research Award
- RESEARCH SHARED: Dr. Lynn Marie Trotti presents her research poster—”Recognizing and Understanding Disorders of Excessive Sleepiness in Students K-12″
- PERSONAL JOURNEYS: HF volunteer and HF Board member both share at the SASM conference their personal stories of living with IH
- MUST WATCH: Jennifer Brea discusses during her TEDTalk what happens when you have a disease doctors can’t diagnose
- INTERESTING READ: Immie Jones shares her life with IH in her blog “But First Let Me Take a Nap”
So don’t worry if you’ve missed anything. We’ve got you covered!
REGISTER TODAY! HF HOSTING A FREE VIRTUAL EVENT
REGISTRATION is now OPEN for “The Research Continues” – the Hypersomnia Foundation’s FREE virtual Hypersomnia Educational event on Saturday, October 24th, 1:00-2:30 p.m. ET.
Join us for a FREE, interactive, 90-minute virtual program, during which hypersomnia experts from both the research and the pharmaceutical sides will provide updates on where their research studies and clinical trials stand. You will not want to miss this virtual event!
Sessions will include:
• HF Research Award Recipient Dr. Caroline Maness will provide an update on her research “Cytokine Profiles in the Central Disorders of Hypersomnolence” and participate in a live Q&A with our viewers.
• Representatives from major pharmaceutical companies will discuss their recent progress in ongoing sleep disorder clinical trials.
You will not want to miss this FREE virtual event! Visit the “Events” section of our website for details and registration information.
RESEARCH FROM HF INTERNATIONAL PATIENT REGISTRY AT CoRDS PUBLISHED
Since March 2015, over 2,300 people have joined the HF International Patient Registry at CoRDS. We now have a valuable dataset for researchers to study and a new research paper has just been published: “Disease Symptomatology and Response to Treatment in People with Idiopathic Hypersomnia: Initial Data from the Hypersomnia Foundation Registry”.
The full-text of this research paper is available 𝗙𝗥𝗘𝗘 through our special link until November 5, 2020, so download the PDF now! Read our summary for the key findings of the research and what we have learned from it about idiopathic hypersomnia symptoms and treatments.
HF WELCOMES TWO NEW BOARD MEMBERS
The Hypersomnia Foundation is proud to announce two new Board members! We are delighted to welcome Anjel Burgess and David Burley to our Board of Directors. “Anjel and David have long been supporters of the Hypersomnia Foundation, and we are excited to have two individuals with such talent and experience join the Board,” said Diane Powell, HF Chair and CEO.
𝗔𝗡𝗝𝗘𝗟 𝗕𝗨𝗥𝗚𝗘𝗦𝗦 is an attorney who specializes in the areas of Social Security Disability Law for adults and children, Veterans Disability and Guardianships. Anjel has been a guest speaker at multiple HF conferences discussing her expertise on advising clients, including idiopathic hypersomnia patients, on their rights and obligations with respect to long-term disability. She has also written articles on Social Security Disability for our newsletter SomnusNooze. Anjel will serve as a strong advocate for those with IH and related sleep disorders. Learn more about Anjel HERE.
𝗗𝗔𝗩𝗜𝗗 𝗕𝗨𝗥𝗟𝗘𝗬 is currently the Chief Technology Officer at Upic Solutions, a non-profit service organization for United Way. Diagnosed with IH in his 20s, he is dedicated to increasing awareness of idiopathic hypersomnia and helping others navigate through their sleep disorder journey. David’s technology expertise will greatly benefit our efforts for increased awareness of IH and improved options for those living with a sleep disorder. Learn more about David HERE.
DR. DAVID PLANTE RECEIVES AASM RESEARCH AWARD
CONGRATULATIONS Dr. David Plante, Hypersomnia Foundation Medical Advisory Board member, for receiving an American Academy of Sleep Medicine (AASM) 2020 Strategic Research Award for his work exploring the potential role of epigenetic modification of PAX8 in IH.
Nadia Gosselin, PhD, from the CIUSSS-Nord-de-l’Ile-de-Montréal, was also awarded AASM funding for her work investigating sleep microarchitecture to better understand idiopathic hypersomnia pathophysiology and phenotype heterogeneity.
The AASM Foundation awarded four recipients nearly $850,000 in funding for the Strategic Research Award, supporting investigator-initiated, high-impact projects. It’s very exciting to have two promising research projects focusing on IH receive AASM recognition and support! Congratulations Dr. Plante and Dr. Gosselin for receiving AASM Foundation 2020 Strategic Research Awards!
Read about their research and the other AASM Award Recipients HERE.
DR. LYNN MARIE TROTTI PRESENTS RESEARCH POSTER
Very excited Dr. Lynn Marie Trotti, Associate Professor of Neurology, Emory University and Chair of the Hypersomnia Foundation Medical Advisory Board, presented her poster “Recognizing and Understanding Disorders of Excessive Sleepiness in Students K-12″, at the American School Health Association Virtual Conference on September 30th.
Authors presented live during a “Sip and Stroll” session of the ASHA virtual conference and answered questions about their poster via text or video chat. Virtual posters also included a three-minute video presentation by the author(s).
PERSONAL STORIES OF LIVING WITH IH SHARED AT CONFERENCE
The Hypersomnia Foundation organized a patient panel for the Society of Anesthesia and Sleep Medicine’s 10th Annual Meeting.
Our 𝗧𝗛𝗔𝗡𝗞𝗦 to HF Volunteer Meghan Mallare and HF Board Member, Michelle Emrich, MD, for sharing during the “Patient Perspectives: Living with Idiopathic Hypersomnia” session, their powerful personal stories of living with IH.
Coming to terms with having a sleep disorder often involves a long and sometimes convoluted process. Unfortunately, the journey does not end once the correct diagnosis is reached. Knowing that others have taken a similar journey, however, can lessen a person’s burden. And hearing about others’ coping strategies can help people who are currently struggling. Consider assisting others by sharing your personal story of living with a sleep disorder. Read other “Personal Journey” stories and find information on how to submit your own.
WHAT HAPPENS WHEN YOU HAVE A DISEASE DOCTORS CAN’T DIAGNOSE?
Five years ago, Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable.
In this poignant TEDTalk, Ms. Brea describes the obstacles she’s encountered in seeking treatment for her condition, whose root causes and physical effects aren’t fully understood. Ms. Brea’s message is relatable to all of us who have struggled searching for an accurate diagnosis and treatment for a rare disease.
Meet Immie Jones, a UK resident who was diagnosed with idiopathic hypersomnia seven years ago. She decided to start her own blog after realizing how hard it is for people with IH to find support. Although Immie’s primary goal is to help people with IH feel less alone, she also hopes to increase awareness of IH, related sleep disorders and chronic illnesses.
“But First Let Me Take a Nap” is now rated one of the top 50 sleep blogs! Read Immie’s latest post – “Cloudy with a Chance of Brain Fog.”