PATIENT ORGANIZATION HIGHLIGHT
DAY4NAPS is a digital database for narcolepsy awareness events occurring on a global scale. Mark Patterson, MD, PhD, President of the organization, adds, “We also provide links to international narcolepsy and sleep organizations, serving to act as a one-stop aid for those seeking information on narcolepsy.”
Having been involved with narcolepsy advocacy organizations for over 15 years, Dr. Patterson saw a need for a non-partisan source of information for patients, their supporters and healthcare providers. “Each of the numerous narcolepsy organizations do a superb job of promoting their efforts,” Dr. Patterson opines, “but often function parallel to other groups. I sought to cross barriers and offer support to all organizations in promoting their activities and services to the entire narcolepsy community.”
LEARNING ABOUT NARCOLEPSY
Day4NAPs offers information and support for those newly diagnosed through long-term patients living with narcolepsy. With Dr. Patterson’s experience as a practicing general pediatrician, a former biochemical researcher and the family member of a person with narcolepsy, he aims for the organization to “cull through globally-sourced information and events.” Says Dr. Patterson, “I use blogs to provide patients with cutting-edge results of new research and medications which may lead to an improvement in their quality of life.”
After the diagnosis of narcolepsy with cataplexy in a close family member in 2004, Dr. Patterson searched the internet for appropriate and timely information about the condition. “Searching for those terms now yields over a million results; screening through these results can be both frustrating and overwhelming,” Dr. Patterson states. “Day4NAPs is now aiming to be the trusted, global source for information.”
AWARENESS ACTIVITIES
Dr. Patterson has been a follower of World Sleep Day in March for many years and timed Day4NAPs to occur on the Saturday following the awareness day. Day4NAPs has been involved in several awareness projects, including having an entry in the local St. Patrick’s Day parade, having a “Narcolepsy Awareness Day” declared on both the city and state levels, and giving local and international presentations.
Dr. Patterson concludes by adding, “By broadening the scope of my narcolepsy information, I have been greatly impressed by the quantity and quality of awareness efforts occurring on a global basis. Patients with narcolepsy deal with similar daily struggles regardless of their location—as do the healthcare providers trying to treat them. This realization has helped to solidify my goal of reaching out to everyone involved and attempts to ease those struggles.”
