First in a Series of Major Milestones Marking Strong Momentum for 2026 and Beyond
CAMAS, Wash., April 9, 2026 /PRNewswire-PRWeb/ -- Narcolepsy Network, a national non-profit organization for people living with narcolepsy and idiopathic hypersomnia (IH), is proud to announce the appointment of Desireé Gorbea-Finalet and Mike Heil to its Board of Directors. Both new members live with narcolepsy and will bring fresh perspectives and deep advocacy experience to the organization as it prepares to celebrate its 40th year.
Meet the New Board Members
- Desireé Gorbea-Finalet: A native of Puerto Rico, and fluent in both English and Spanish, Desireé has an extensive background as a patient advocate. At Disability Rights North Carolina, she runs a program devoted to screening and training for brain injuries. She also monitors state prisons for appropriate treatment of disabled inmates, and sits on the American Red Cross National Ability Network Steering Committee to facilitate peer support for their Neurodiversity & Invisible Disability Groups.
- Mike Heil: Based in Arizona, Mike is a retirement planning consultant who has spent years as an ardent voice for the narcolepsy community. His advocacy work includes writing, podcasting, and moderating both live and virtual support groups. Mike has presented at Narcolepsy Network conferences and has frequently represented the sleep community during Rare Disease Week events in Washington, D.C.
"We are incredibly excited to welcome Desireé and Mike to the board. Their energy and dedication in helping others who are living with narcolepsy will bring tremendous value as we evolve to further support the community, especially people who are newly diagnosed," said Keith Harper, President of the Board, Narcolepsy Network. "The newly expanded Board of Directors is building strong momentum that will take us through 2026 and beyond. The highlights include significant progress in our search for a new Executive Director—whom we expect to introduce later this month."
Save the Date of November 14
In addition to the expansion of our board, Narcolepsy Network is pleased to announce a special one-day event to be held in New York City on November 14. This one-day conference seeks to duplicate the success of Narcolepsy Network's condensed, high-impact gathering in 2024. It aims to provide an opportunity for members to connect and learn—especially as the sleep community navigates the exciting and evolving new medications that will begin to hit the market this year and next.
Stay tuned for more details on our 2026 event, including registration information. Plans for a two-day Narcolepsy Network conference are also underway for 2027.
About Narcolepsy and IH
Narcolepsy and idiopathic hypersomnia (IH) are neurological disorders that cause excessive daytime sleepiness (EDS) and disrupt daily life. Narcolepsy may also include cataplexy (sudden muscle weakness), sleep paralysis, and vivid dreams, while IH involves EDS, prolonged sleep and difficulty in both waking and staying awake, along with sleep inertia.
Narcolepsy affects about 1 in 2,000 people in the U.S., with far fewer diagnosed with IH. However, both conditions are considered to be under-recognized, with studies showing up to 50% of people with narcolepsy—and an even higher percentage with IH —do not have their condition diagnosed in a timely manner. You can read more about narcolepsy and IH here.
About Narcolepsy Network
Founded in 1986, Narcolepsy Network is a 501(c)(3) nonprofit supporting people with narcolepsy, idiopathic hypersomnia, and related sleep disorders through education, advocacy, support, and community-building.
For more information about Narcolepsy Network and upcoming events, please visit www.narcolepsynetwork.org.
Media Contact
Jennifer Fugel, Newsmaker Group, 1 8453000633, [email protected]
SOURCE Newsmaker Group
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