Investing in the Future of People with Idiopathic Hypersomnia

An insatiable need to sleep that is not eased by a full night’s slumber is one of the debilitating effects of a rare, chronic neurological disorder called idiopathic hypersomnia (IH). In a society where feeling tired is the norm, IH is often unrecognized or misdiagnosed by medical professionals, as well as misunderstood by family members, employers, and society in general.

IH often strikes people in the prime of their lives. No US Food and Drug Administration-approved treatments exist, although wake-promoting medications are sometimes prescribed “off-label.” Unfortunately, these medications don’t work well for everyone, and most stop working over time or have bothersome side effects. Even when medications do help people with hypersomnia stay awake during the day, they may not help with other symptoms of IH, such as extreme difficulty making the transition from sleep to waking (called sleep inertia or sleep drunkenness) that can negatively impact mental and physical tasks and often manifests as cognitive dysfunction. The relentless nature of the disorder makes it extremely difficult for people with IH to hold down jobs, remain in school, maintain marriages, and fully engage with their family and friends.

The Scientific Advisory Board of the Hypersomnia Foundation is creating a plan to raise awareness about hypersomnia among clinical and basic science researchers. One key component of this plan is a grants program that will financially support innovative research applications that are most likely to positively impact the hypersomnia community. Announcement of this program to the scientific community will depend upon having funds in hand sufficient to attract the best science as well as sustain this initiative. There are multiple reasons that we need to fund research for IH:

  1. We don’t really know how many people have IH. This number is vital for scientists to apply for grants and so that we can encourage pharmaceutical companies to study IH.
  2. 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.
  3. The tests that we do have are often inaccurate, and repeating them is very expensive.
  4. No drugs have US Food and Drug Administration approval for the treatment of IH.

Your donation today to the Hypersomnia Foundation serves the mission 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, cures for these debilitating conditions.

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