Press Release November 29, 2016 – Today The Hypersomnia Foundation, Inc., the leading hypersomnia advocacy and awareness non-profit, joins #GivingTuesday, a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. The Hypersomnia Foundation is joining the #GivingTuesday movement to raise awareness and monies for research that will be restricted to study Idiopathic Hypersomnia (IH), a rare, chronic neurological disorder that causes an insatiable need to sleep that is not eased by a full night’s slumber, as part of the Let’s get #beyondsleepy campaign.
In a society where feeling tired is the norm, it can be difficult to comprehend the devastating impact of the disorder, which causes sleep inertia (extreme difficulty making the transition from sleep to waking), and mental fogginess even during the few hours a day people with IH can remain awake. Many with the disorder sleep up to 11 hours out of 24. The relentless nature of the disorder makes it extremely challenging for people with IH to hold down jobs, remain in school, maintain marriages and fully engage with their family and friends. Hence this year’s call to action: Let’s Get #beyondsleepy
“We are pleased to offer this opportunity to our supporters so that they can help in the quest to understand IH more fully,” said Cate Murray, CEO of the Hypersomnia Foundation. “We understand the struggle that individuals and their families are going through living with this little-known and devastating disorder and how crucial future research is to them.”
Why raise awareness of and restricted funds for research for Idiopathic Hypersomnia (IH)?
- We don’t know how many people have Idiopathic Hypersomnia (IH) which is vital for scientists to apply for grants and encourage pharmaceutical companies to study IH. The first step towards having this number is building awareness of the disorder.
- We don’t have a biomarker, a substance in the body, such as blood or spinal fluid that can tell us whether or not a person has IH – making further research imperatives.
- The tests that we do have are often inaccurate and repeating them is very expensive.
- There is no FDA approved treatment. While wakefulness-promoting medications are sometimes prescribed, ”off-label”, these medications don’t work well for everyone and they may also stop working overtime and/or have bothersome side effects.
Get involved and learn more at http://www.hypersomniafoundation.org/2016givingseason/ Share Let’s Get #beyondsleepy on Social Media on #GivingTuesday, November 29, 2016 and throughout the giving season.
About Hypersomnia Foundation
The Hypersomnia Foundation, Inc. strives to improve the lives of people with idiopathic hypersomnia and related disorders by advocating on their behalf, providing support, educating the public and healthcare professionals, raising awareness, and funding research into effective treatments, better diagnostic tools, and, ultimately, a cure for these debilitating conditions.
#GivingTuesday is a movement to celebrate and provide incentives to give—the 2016 iteration will be held on November 29, 2016. This effort harnesses the collective power of a unique blend of partners—nonprofits, businesses and corporations, as well as families and individuals—to transform how people think about, talk about and participate in the giving season. #GivingTuesday inspires people to take collaborative action to improve their local communities, give back in better, smarter ways to the charities and causes they celebrate and help create a better world. #GivingTuesday harnesses the power of social media to create a global moment dedicated to giving around the world.
For more information, please contact:
Diane Powell, Board of Directors
Hypersomnia Foundation, Inc.