SomnusNooze
Once again, our incredible hypersomnia family has come together to support each other in a most amazing way. As you know, several anonymous donors challenged our community to enroll in the Hypersomnia Foundation Registry at CoRDS during the month of September. You responded beyond anyone’s imagination—118 people enrolled, bringing the total number of enrollees to 350! Completing those questionnaires and the entire enrollment process wasn’t easy, but you persevered—and the results are tangible. Not only did you raise $5900 for research, but two researchers have already submitted grant applications to the US Food and Drug Administration and the National Institutes of Health with the intent of using data from the Registry in their research. Having this incredible resource available gives scientists a leg up in applying for funding.
Although the challenge has come to an end, it is not too late to add your piece to the hypersomnia puzzle. The more people who participate, the more likely it is that scientists will be able to complete the puzzle and find effective treatments and a more thorough understanding of the cause of IH. Go to hypersomniafoundation.org/registry for more information.
Have You Joined the Registry Yet?
A patient registry is a collection that is established to collect standardized information about a group of patients who share a common condition or experience. In the case of the Hypersomnia Foundation Registry at CoRDS (Coordination of Rare Diseases at Sanford), the people who participate have one of the central disorders of hypersomnolence: idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy (type 1 or 2). Becoming part of the registry is easy and it could help solve the puzzle of hypersomnia! Simply go to http://www.sanfordresearch.org/cords/ and click on the ENROLL NOW button.