Narcolepsy Network, Inc. began in 1984 as a task force of its predecessor, the American Narcolepsy Association (ANA). When, in May 1985, it became clear that fundamental issues facing the ANA could not be resolved, the task force reorganized as a steering committee to form a new organization.
The Network was incorporated as a national not-for-profit organization in April 1986 at a meeting at the Chilton House in Shrewsbury, NJ. The founders of the newly-formed Network reflected the national scope of the new organization:
|Ruth Justice Nebus -NJ
Norma J. Potter – FL
Nicole L. Kephart – OR
Ann Matthes – MA
|Eve Davis – NH
Sheryll Sue Carella – CA
Niss H. Ryan – NY
Clair S. Sassin – DC
|Violet Baumann – NJ
Blanche Baechalin – NJ
Lorraine Baird – NJ
The new organization was founded around the four objectives of the group: Communication, Advocacy, Research and Education. Narcolepsy Network, Inc. held its first conference and election of Trustees in May 1986.
By 1988, the Third Annual conference of the Narcolepsy Network drew 200 people to New York City to see the first William C. Dement award given to Dr. John Holloman. This award was established in Dr. Dement’s name in appreciation for his life’s work in the field of Narcolepsy research. It is a grant given to young researchers who show promise in the field of Narcolepsy.
Returning home at the end of 1990, the first ever â€œWake Up Americaâ€ van, staffed by member volunteers of Narcolepsy Network, traveled 12,000 miles, visited 17 different local support groups around the country and distributed information about Narcolepsy and other sleep disorders to the public in an effort to bring attention to the ongoing work of the National Commission for Sleep Disorders Research. The Commission had been established by Congress in 1988 to assess existing knowledge and available resources in the field of sleep disorders vs. the needs of the public and to develop a long-range plan for sleep disorders research. The effort culminated in June 1993 when President Clinton signed legislation establishing the National Center for Sleep Disorders Research within the National Institutes of Health.
In 1996, the Network brought a part-time office manager on board – its first paid employee. In 1998, the first Executive Director, Howard Wolfe, was appointed and opened the office in New Jersey. He was succeeded by Robert Cloud, former Board member and president of the Network, who became Executive Director in 1999, serving until 2003 in a part-time capacity. In August 1999, the headquarters of the Network moved to Cincinnati, Ohio. In late 2004, when the Network’s current Executive Director Dr. Eveline Honig came on board in a half-time capacity, the office was moved to and remains in North Kingstown, RI.
Over the years, Narcolepsy Network has grown from a mere handful of members of to approx. 1400 members. This growth is due to many factors that include greater public awareness of narcolepsy, a more than ten-fold increase in the number of sleep centers in the U.S. and the greater access, visibility and reach the Internet has afforded smaller organizations such as the Network and their constituents.
Today, with a part-time staff of 4 and a committed â€œworkingâ€ Board, Narcolepsy Network directly assists many hundreds of people with narcolepsy each year; educates and informs tens of thousands through our website, educational materials, newsletters and email distribution; actively participates in key professional and industry meetings and advocates for our community whenever need and opportunity present.