In Case You Missed It! – January 2020
Happy New Year! Let’s start 2020 by being well informed! Get up to date with the news we’ve shared via social media in the latest “In Case You Missed It!”
TAKE A 10-MIN SURVEY AND HELP NORD LEARN MORE ABOUT IH!
The National Organization for Rare Disorders, Inc. (NORD) has asked us to help them better understand the barriers involved in the diagnosis, care, and treatment of rare diseases in the U.S. Thirty years ago, and again in 2003, NORD conducted surveys of the barriers and facilitators involved in rare diseases, and now they want to know what has improved (or worsened). SO PLEASE TAKE THIS 10-MINUTE SURVEY, and help NORD advance research and innovation in rare diseases, including IH! The HF is proud to have become a NORD member in December 2019.
SHARE YOUR EXPERIENCES LIVING WITH IH
Are you living with idiopathic hypersomnia and excessive daytime sleepiness? Or is your loved one? You may be able to participate in a half-day Atlanta-area meeting to advise a large pharmaceutical company about what it’s like to live with IH.
A global pharmaceutical company aims to deepen its understanding of the experience of people with IH. To support this, the company is looking for people living with IH and their care partners to participate in a half-day advisory board meeting on February 29 in Atlanta, Georgia. Participants will be compensated for their time and reimbursed for expenses.
This opportunity is currently open only to U.S. residents. VOZ is seeking a diverse representative group of people with IH. All ethnicities and genders encouraged to apply.
– Participants must be aged 18 years or older, and
– Be living with idiopathic hypersomnia and excessive daytime sleepiness, or
– Be a care partner of someone living with idiopathic hypersomnia and excessive daytime sleepiness.
The company has contracted VOZ Advisors to facilitate the advisory board meeting. If you are interested in the opportunity to share your perspectives about idiopathic hypersomnia or have any questions, please contact Sarah Friedhoff at or call (212) 620-2753 to arrange for an initial phone screen.
CONTACT YOUR U.S. REPRESENTATIVES TO ENDORSE THE RARE ACT
HF has joined with 139 other patient organizations to endorse the Rare Diseases Advancement, Research, and Education (RARE) Act (H.R. 4228) in the 116th Congress. Ask your reps in Congress to cosponsor by contacting Ryan Shay at .
HF is also pleased to have endorsed EveryLife Foundation’s statement asking Congress to develop drug-pricing proposals that continue to incentivize innovation for rare diseases. As Congress continues to consider ways to address the affordability and pricing of emerging drug therapies, we encourage policy makers to remember that millions of Americans living with rare diseases do not have any access to treatments. This lack of access is not simply because they are unaffordable, but because the grim reality is that 93% of the 7000 rare diseases have no FDA-approved therapies. Ensuring a favorable access environment is a priority for the rare disease community but must be approached in a manner that recognizes the complexities of the issue, while continuing to incentivize innovation within rare diseases.
JOIN HF IN PHILADELPHIA THIS JUNE
LIVING WITH AN INVISIBLE DISABILITY
In this personal story recently published on HuffPost, a woman with postural orthostatic tachycardia syndrome (POTS) shares why she’s done hiding her invisible disability. It can be a struggle to be vocal about your daily needs; hopefully this article will encourage you to find your voice.
An article recently published on “Medium” states that laziness does not exist… but unseen barriers do. Social psychologist Devin Price writes, “if a student is struggling, they probably aren’t choosing to. They probably want to do well. They probably are trying.” Price also encourages “people to take a curious and empathic approach to individuals whom they initially want to judge as lazy or irresponsible…. If a person can’t get out of bed, something is making them exhausted.”
Price’s article is definitely worth a read… then share it with friends and family who might need a better understanding of exhaustion.
COLLEGE SCHOLARSHIPS AVAILABLE FOR HIGH SCHOOL SENIORS WITH IH
HF is happy to announce Project Sleep’s launch of their 7th annual Jack & Julie Narcolepsy Scholarship supporting students with narcolepsy and IH while fostering awareness in high school and collegiate settings. In 2020, Project Sleep plans to award 15 scholarships of $1,000 each, including 10 scholarships for students with narcolepsy and five scholarships for students with IH, supported through a partnership with HF.
High school seniors living with narcolepsy or IH, who are planning to attend four-year universities in the U.S. are encouraged to review the eligibility criteria and apply.
Please share with local schools, doctor offices, and sleep centers!
ARTIFICIAL NEURONS DEVELOPED TO CURE CHRONIC DISEASES
Artificial neurons on silicon chips, which behave just like the real thing, have been invented by scientists — a first-of-its-kind achievement with enormous scope for medical devices to cure chronic diseases. The research team, led by the University of Bath and including researchers from the Universities of Bristol, Zurich and Auckland, describe the artificial neurons in a study published in “Nature Communications.”
Study co-author, Professor Julian Paton, a physiologist at the University of Auckland and the University of Bristol, said: “Replicating the response of respiratory neurons in bioelectronics that can be miniaturized and implanted is very exciting and opens up enormous opportunities for smarter medical devices that drive towards personalized medicine approaches to a range of diseases and disabilities.” Read more HERE.
UPDATE YOUR INFORMATION IN THE CORDS PATIENT REGISTRY
If you have been diagnosed, anywhere in the world, with idiopathic hypersomnia, Kleine-Levin syndrome, narcolepsy, or hypersomnia associated with certain other conditions, you can make an important contribution to hypersomnia research by sharing information about your symptoms, your previous treatments, and your diagnostic journey in the Hypersomnia Foundation’s Registry at CoRDS (Coordination of Rare Diseases at Sanford).
With over 2,000 participants, this information is helping researchers in their efforts to unlock the mysteries of rare sleep disorders.
Start the New Year by registering in CoRDS and if you are already registered, be sure to update your information annually.
HELP BRIDGE THE GAP BETWEEN RARE DISEASE AND HEALTHCARE
Having a rare disease can mean frustrating encounters with your healthcare provider.
You can help change the way medical professionals evaluate, diagnose and care for rare disease patients by being a part of Global Genes’ RARE Compassion Project, which matches rare disease patients and families with medical and healthcare students, giving the rare disease community a unique opportunity to:
- Share first-hand rare disease experiences
- Connect the rare disease and healthcare communities
- Build a better understanding of treatment and care
Additionally, this program will give you the opportunity to learn about the challenges healthcare providers face when treating a rare disease or condition. This is your chance to promote a more compassionate approach to treatment for rare disease patients.
“As a rare disease patient who was diagnosed as an adult, I’m working from a different playing field – less support, fewer options and a lot more questions. I appreciate the opportunity to educate the next generation of doctors in hopes that they will be better able to treat not only patients like me, but all rare disease patients.” – Bryna Sullivan, 2019 RARE Compassion Project participant
Matches are made year-round. Sign up now.
2019 YEAR-END FUNDRAISER A SUCCESS!
Thanks to the AMAZING GENEROSITY of our donors, we met our end-of-year fundraising goal of $15,000 – and our $15,000 match challenge! We received gifts from long-time supporters, new donors, and members of our Medical and Scientific Advisory Boards!
Thanks to Dr. David Rye’s parents and an anonymous donor, the $15,000 raised was matched – that’s $30,000 to support our work. What a great way to kickstart 2020! We have a robust list of things to accomplish this year to increase the education and awareness of IH and related sleep disorders and to further advocate for research and better treatments.
ANOTHER GREAT WAY TO SUPPORT HF ALL YEAR LONG!
Humble Bundle, Inc. is a digital storefront for video games where collections of games are sold at a price determined by you – the purchaser – with a portion of the price going towards charity and the rest split between the game developers.
The Hypersomnia Foundation is one of the charities selected by Humble to receive donations!
It’s simple… When you make a purchase in the Humble Store, choose the “Charity” tab at the top of the page. Through “Humble Rewards”, 10% of the net revenue from your purchase can be donated to the charity of your choice. At checkout, there’s a drop-down menu of charities. Simply scroll through the list until you find the “Hypersomnia Foundation.”
Do some shopping and support the Hypersomnia Foundation all year long!