We trust everyone is practicing physical distancing and wearing a facemask as you enjoy the summer sunshine and stay in touch with family and friends! 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!”
- ACTION NEEDED: Tell U.S. Congress to support telehealth during COVID-19 and beyond.
- GREAT INTERVIEW: Radio BIG 103 talks with Amy Desmarais and her family about living with a rare sleep disorder.
- CLINICAL TRIAL: Northwestern is recruiting people with narcolepsy for their ASCENT clinical study.
- FINANCIAL ASSISTANCE: Applications open for caregiver financial support and educational scholarships for adults age 17 and up.
- PERSONAL ESSAY: Read the personal journey of living with a chronic illness and the quest for a diagnosis.
- FREE RESOURES: Download free materials from the Hypersomnia Foundation website.
- EXPRESS YOUR CREATIVITY!: Submissions now being accepted for the 2020 Rare Artist Contest.
- CONGRATULATIONS!: Georgia attorney, Anjel Burgess, receives high rating from leading attorney-rating organization.
- IN MEMORIUM: Remembering Dr. William Dement, the Father of Sleep Medicine.
So don’t worry if you’ve missed anything. We’ve got you covered!
ACTION NEEDED! TELL U.S. CONGRESS TO SUPPORT TELEHEALTH DURING COVID-19 AND BEYOND
The current COVID-19 health crisis has put a massive strain on the healthcare system in the U.S. and throughout the world. During this time, telehealth services have emerged as a critical tool to provide care to patients while supporting physical distancing efforts and reducing the spread of COVID-19 and other infectious diseases by avoiding unnecessary outpatient visits.
Telehealth services have allowed physicians to continue providing high-quality care. Remaining vigilant in the battle against COVID-19, it is important to recognize that expanded use of telehealth technology should have a permanent place in the healthcare system.
While the U.S. Congress considers new “phase-four” COVID-19 relief legislation, they should ensure that telehealth services are covered and remain available at the end of the COVID-19 public health emergency.
Specifically, the U.S. Congress should permanently lift the geographic and site restrictions on telehealth technologies so all Medicare beneficiaries have access to telehealth services, including from home, regardless of where they live.
Visit the Physicians Grassroots Network for information on how to easily contact your Senators and Representative today and tell them that any new COVID-19 relief legislation should include the telehealth provisions outlined above.
Expanded telehealth IS working for patients – let’s fight to keep it that way!
RADIO BIG 103 TALKS WITH AMY DESMARAIS AND HER FAMILY ABOUT LIVING WITH A RARE SLEEP DISORDER
Listen to a great interview with volunteer/former Hypersomnia Foundation Board member Amy Desmarais, her husband and HF’s Technical Officer Evan Desmarais, and Amy’s mother Debra Haradan, on Radio BIG 103 Boston’s weekly show “Boston Outlook”. Amy, Evan, and Debra talk about IH, treatments, research, and the personal journey of living with a rare sleep disorder.
Our thanks to BIG 103 radio and Amy, Evan, and Debra for sharing their story! Listen to a recording of the broadcast HERE.
NORTHWESTERN NOW RECRUITING PEOPLE WITH NARCOLEPSY FOR THEIR ASCENT CLINICAL STUDY
Have you been diagnosed with narcolepsy? Do you struggle with depression or anxiety?
The Behavioral Sleep Medicine Lab at Northwestern is now recruiting adults with narcolepsy in the U.S. for their study evaluating the feasibility of a mindfulness meditation program designed to reduce psychological distress for people with narcolepsy. The principal investigator is Jason Ong, PhD, a member of HF’s medical advisory board.
Eligible volunteers will be asked to:
- Complete an assessment to determine eligibility to participate.
- Participate in a mindfulness intervention delivered through live video conferencing.
- Complete study assessments every four weeks for 12 weeks.
If interested in participating in the Awareness and Self-Compassion Enhancing Narcolepsy Treatment (ASCENT) study, please call Northwestern at (312) 503-6627. For more information about this study, visit ClinicalTrials.gov.
FINANCIAL ASSISTANCE AVAILABLE
Applications Now Open for Caregiver Financial Support
Support for our caregivers! Caring for a loved one with a rare disease can take significant time, attention, patience, and dedication.
The NORD Rare Caregiver Respite Program is specifically designed to give back to caregivers—the parent, spouse, family member, or significant other—of a child or adult living with a rare disorder and provides financial assistance to enable the caregiver to participate in a conference, event or simply have an afternoon or evening away.
Financial assistance will be granted up to $500 annually for those who qualify. Awards may be spread throughout the year or in a single use and are granted on a first come, first served basis to eligible individuals.
For more information, visit the NORD website or call (203) 616-4328.
Educational Scholarships for Adults Age 17 and Up
It’s Time to Pursue Your Dream! Living with a rare disease means managing unique challenges, including frequent doctor visits, rigorous treatment regimens, hospitalizations, and disruptions to daily life. Individuals living with rare diseases often face disparities in achieving traditional life milestones.
The EveryLife Foundation for Rare Diseases has established the #RAREis Scholarship Fund—to enrich the lives of adults living with rare diseases by providing support for their educational pursuits. Thanks to the support of Horizon Therapeutics, one-time awards of $5,000 each will be granted to up to 32 recipients (age 17 and up) for the Spring 2021 semester.
Deadline for applications is August 28th, 2020 @ 3:00 p.m. CDT
Visit the #RAREis Scholarship Fund website for more information.
I’VE SEEN OVER 50 DOCTORS AND NO ONE KNOWS WHAT’S WRONG WITH ME
In this HuffPost essay, New York writer Caroline Shifke, shares her personal journey living with a chronic illness and the quest for a diagnosis.
Through her struggles, she realized that receiving a diagnosis became secondary to a more important goal: living a good life that accommodates, but doesn’t focus on, her illness and learning how to live with it.
Although Ms. Shifke does not suffer from a sleep disorder, her personal journey resonates with many who struggle every day with a rare disease.
DOWNLOAD FREE RESOURCES FROM THE HYPERSOMNIA FOUNDATION WEBSITE
How can you receive the best care from your healthcare providers? How do you negotiate for accommodations or benefits? We have the answers in our patient resource brochure: Self-Advocacy Tips for People with Idiopathic Hypersomnia and Related Disorders. This FREE brochure gives you tips and ideas on how to effectively advocate for your needs, along with links to many useful resources.
Do you have a copy of our “Idiopathic Hypersomnia Summary: Characteristics and Diagnostic Criteria” document? You can download it for free, take a screenshot on your phone, save it to your “Favorites” – do whatever it takes so it’s easily accessible if you, your family members, or medical team ever need it.
Navigating through the disability and health insurance system can be challenging. Do you have questions about your rights at the workplace? Do you know what SSA disability benefits are available for someone with IH? Do you have questions about service dogs? Read through our online library of disability and health insurance related articles and let us help answer your questions.
EXPRESS YOUR CREATIVITY!
The EveryLife Foundation is accepting submissions for the 2020 Rare Artist Contest! This annual event was established to empower individuals affected by rare diseases to express their unique story through art and bring awareness to the rare disease community.
Anyone connected to the rare disease community can submit artwork; including caregivers, patients, physicians, siblings, and friends. You do not need to be a professional artist or hold any sort of credentials in order to enter into the contest. There are three different categories dependent on age, anyone who is ages 4+ can enter.
For more information, visit the Rare Artist website.
GEORGIA ATTORNEY RECEIVES HIGHEST RATING FROM LEADING ATTORNEY-RATING ORGANIZATION
Congratulations to Georgia attorney, Anjel Burgess, for receiving the highest rating of 10/10 from leading attorney-rating organization, AVVO. Read more about Ms. Burgess HERE.
We’re so grateful to Anjel Burgess for generously sharing her time and expertise with the Hypersomnia Foundation! She had agreed to present at our June 2020 conference in Philadelphia, which was cancelled due to the pandemic. We hope to have Ms. Burgess speak at a future HF event, but for now, here are a few of the articles she has written on Social Security Disability for our newsletter SomnusNooze:
REMEMBERING DR. WILLIAM DEMENT, THE FATHER OF SLEEP MEDICINE
We are saddened by the recent passing of Dr. William Dement, a founder of sleep medicine and sleep research. A longtime faculty member of the Stanford University School of Medicine, Dr. Dement helped raise awareness of sleep disorders and the dangers of sleep deprivation through his many books and lectures. He was an ardent campaigner against the dangers of drowsiness, and his mission was to educate the world about the importance of sleep. His efforts to “wake up policymakers” led to the creation of the National Center on Sleep Disorders Research and increased federal funding for sleep research. Dr. Dement was one of the founding editors of the international journal “Sleep,” and the author of multiple sleep-related books for lay readers.
“William Dement was a force of nature. A pioneering researcher and clinician, and a legendary teacher, his passion to uncover sleep’s secrets and to share these discoveries was unquenchable,” said Lloyd Minor, MD, dean of Stanford University School of Medicine.