Julie Flygare, JD, founder of the non-profit organization Project Sleep and the Narcolepsy: Not Alone campaign, was recently recognized at the RareVoice Awards Gala in Washington, DC, hosted by Rare Disease Legislative Advocates.
Julie Flygare, JD, founder of the non-profit organization Project Sleep and the Narcolepsy: Not Alone campaign, was recently recognized at the RareVoice Awards Gala in Washington, DC, hosted by Rare Disease Legislative Advocates. The gala is designed to honor advocates who have made a difference in the fight against rare diseases, according to the EveryLife Foundation for Rare Diseases. Julia Jenkins, executive director of the EveryLife Foundation, explains that the public submits nominations to the group for these awards to recognize outstanding work in this area.
The event was emceed by news anchor Greta Kreuz and actor Jonny Lee Miller, who was also honored with an Abbey for speaking on Capitol Hill to urge Congress to spur the development of treatments for rare diseases. Representative Doris Matsui (D-CA) was honored with the Congressional Leadership Award and various other congressional staff also received recognition, as did leaders from the National Institutes of Health (NIH).
In addition to Project Sleep and the Narcolepsy: Not Alone campaign, other patient organizations and individuals as well as individual patient advocates were honored, including the March of Dimes, the National Down Syndrome Society, Kim & Mike Illions – Pediatric Hydrocephalus Foundation, and Gabriella Miller (posthumous) – Smashing Walnuts Foundation.
A Woman with a “Roar”
According to a Federal Patient Advocates video, Flygare was diagnosed with narcolepsy with cataplexy at the age of 24 when she was a law student. Flygare says, “I watched symptoms and treatments just take over my life and it really was a nightmare.” However, moved to make a difference in the lives of others coping with narcolepsy, her activist efforts began with the Food and Drug Administration’s (FDA) Patient-Focused Drug Development Initiative. This program strives to provide for a more systematic approach to obtain the patient’s perspective on the disease severity and the currently available treatments.
Flygare and other activists were able to have narcolepsy accepted as part of this initiative and it was one of 20 diseases selected for the program. It was the first rare disease to go through the program, Flygare says, which she says worried the FDA but not her. She declares,” We may be rare, but we’ve got roar.”
Making Sleep Cool
The core mission of Project Sleep is to educate people about sleep health and sleep disorders, with a primary vision of making sleep “cool,” according to ProjectSleep.com. The non-profit group aims to improve public health by educating individuals about the importance of sleep health and related disorders. In addition, the foundation strives to educate and empower individuals using events, campaigns, and programs to bring people together and talk about sleep as a pillar of health.
You’re ‘Not Alone’
Flygare first launched the Narcolepsy: Not Alone campaign in 2013, with the idea to grow a photo community that provides comfort to those living with narcolepsy while showing the world the real faces of narcolepsy, as indicated on the Project Sleep website. The successful campaign continues its growth with over 1,100 photos submitted from all 50 US states and 42 countries.
The website also aims to empower patients and supports with fact sheets, e-cards, gear, resources, and tools to connect to others who cope with this rare disease. The campaign strives to show the people living with this condition that they are not alone and are part of an international community of people building a brighter future for narcolepsy, according to Project Sleep.
Along with her global community of supporters and advocates, Flygare will undoubtedly do what she says on her personal website and, “put narcolepsy on the map.”
To view a video of the nominees for the RareVoice Awards this year, visit:
Cassandra Perez is associate editor of Sleep Review. CONTACT [email protected]