In Case You Missed It! – February 2020
2020 is a Leap Year, which gives you an extra day in February to get up-to-date with the news we’ve shared via social media. Hope you enjoy this latest edition of “In Case You Missed It!”
- TIME TO CELEBRATE: The Hypersomnia Foundation celebrates its sixth birthday
- NEW VIDEO: Dr. Andrew Jenkins’ “IH and GABA” conference video released
- DRUG APPROVAL: European Commission approves Sunosi for excessive daytime sleepiness
- NOW RECRUITING: Clinical Trials for 2 new medications are seeking participants
- WORTH WATCHING: Living with a chronic disease shared in TEDx Talk
- INTERESTING READ: Rare disease U.S. policy issues discussed in NORD’s newest “State of the States Report”
- WORTH SHARING: What people with invisible illnesses want you to know
- MARK YOUR CALENDAR: NORD’s “Living Rare, Living Stronger” conference coming to Cleveland
- GOOD TO KNOW: Help ensure that your financial planning checklist is complete with Global Genes Webinar “Make Sense of Your Dollars”
- COLLEGE SCHOLARSHIPS: The Jack & Julie Narcolepsy Scholarship Program is now accepting applications from U.S. high school seniors.
So don’t worry if you’ve missed anything – we’ve got you covered!
HAPPY BIRTHDAY to… US!! We are excited to be celebrating six years of raising awareness, educating others, and raising funds for increased research and better treatments for IH and other rare sleep disorders!
DR. ANDREW JENKINS’ “IH AND GABA” VIDEO RELEASED
We are excited to release Dr. Andrew Jenkins’ “IH and GABA” presentation from the HF Conference in Baltimore. In this video, with accompanying PowerPoint slides, Dr. Jenkins describes the current understanding of how GABAA receptors are activated and modulated. He discusses how this is different in people with IH and how these differences can be corrected by therapeutics.
The European Commission has approved Jazz Pharmaceuticals’ Sunosi (solriamfetol) to improve wakefulness and reduce excessive daytime sleepiness (EDS) in adults with narcolepsy (with or without cataplexy) or with obstructive sleep apnea (OSA) whose sleepiness has not been satisfactorily treated by primary sleep apnea therapy, such as CPAP. (Note: Sunosi was approved by the U.S. FDA in March 2019.) Read more here.
TWO CLINICAL TRIALS NOW RECRUITING PEOPLE WITH IH
Jazz Pharmaceuticals has just submitted a new drug application to the U.S. FDA for JZP-258 (low-sodium Xyrem) to treat cataplexy and excessive daytime sleepiness associated with narcolepsy. Jazz is currently recruiting people with IH for a clinical trial of this same medication.
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 IH. This pharmacokinetic and safety study of TAK-925 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 for the study is up to 43 days and includes reimbursement for time and travel.
LIVING WITH A CHRONIC DISEASE SHARED IN TEDx TALK
Join Olivia Larner as she explains her journey of suffering with chronic illnesses, including IH, in her TEDx Talk “Confronting the Invisible.” Olivia contextualizes her experience through the “Spoon Theory” and explains how you should respond to someone with a chronic illness. Watch this great TEDx Talk and share with family and friends.
U.S. RARE DISEASE POLICY ISSUES DISCUSSED IN NORD’S NEWEST “STATE OF THE STATES REPORT”
The 5th edition of the annual “State of the States Report” was recently released by the National Organization for Rare Disorders (NORD) and its Rare Action Network (RAN). While many U.S. states took powerful steps forward in 2019, there is major work yet to be done on a number of policy issues critical to over 25 million Americans affected by rare diseases.
Read a summary of NORD’s report and if you are interested in joining the HF legislative advocacy team, email .
WHAT PEOPLE WITH INVISIBLE ILLNESSES WANT YOU TO KNOW
Living with an invisible illness presents its own set of unique challenges. Although symptoms differ from person to person, those with an invisible illness often share similar experiences with stigma, discrimination and misconceptions. In this HuffPost article, people with invisible illnesses share what they want others to understand about living with a health condition no one can visibly see.
NORD’S “LIVING RARE, LIVING STRONGER” CONFERENCE COMING TO CLEVELAND
APPLICATIONS ARE NOW OPEN (due March 2, 2020) for scholarships to assist with the cost of attending the National Organization for Rare Disorders (NORD) “Living Rare, Living Stronger” conference in Cleveland, OH on May 14-16, 2020. This event provides patients and supporters with practical tools for living their best lives with rare diseases.
ARE YOU FINANCIALLY PREPARED GOING FORWARD?
Whether you’re a person with a hypersomnia or one of their supporters, the struggle to ensure financial security is very real. Are terms like “special needs trusts”, “government benefits”, “caretakers’ disability insurance”, “MOIs”, and “powers of attorneys” familiar to you? Help ensure that your financial planning checklist is complete by viewing the Global Genes RARE Webinar “Make Sense of Your Dollars” video and accompanying PowerPoint slides.
The Global Genes RARE Webinars are resources on various topics affecting rare disease patients, families and caregivers. Featuring a “live” panel from industry experts and experienced advocates, the RARE Webinars cover topics including financial planning, navigating health insurance, transition of care and precision medicine. We hope you find these resources helpful in your rare disease journey!
SCHOLARSHIPS AVAILABLE FOR HIGH SCHOOL SENIORS 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.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.
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.The deadline for applying is April 1, 2020. Please share with local schools, doctor offices, and sleep centers.