Families and Children Experiencing Symptoms of Narcolepsy

FACES of Narcolepsy

FACES of Narcolepsy is a 501(c)(3) non-profit organization designed to provide those directly impacted by pediatric narcolepsy, children and emerging adults diagnosed with narcolepsy (type 1 or 2) and their families, an avenue for connection, information and guidance as they journey through the ups and downs of growing up with this illness.

Narcolepsy is HARD.

Imagine you have been awake for 72 hours.

Imagine when you are able to sleep, it doesn’t refresh you.

Imagine you are plagued with terrifying nightmares.

Imagine you literally fall over laughing when something is funny.

Imagine nobody understands what you feel.

THIS is narcolepsy.
And there is NO cure.

 

Sleeping Super Hero

Why we exist…

There are a number of organizations with their attention on the narcolepsy community, but as parents of children with narcolepsy, we noticed a gaping hole in the attention on, programming for and education about pediatric narcolepsy. We want the best possible experience for our children, so we are doing our best to fill in the gap and shine a beacon on this community to heighten awareness of pediatric narcolepsy and the medical, psychological, psycho-social, and assistance needs of this previously out-lying group of patients.

Historically, narcolepsy has been thought to solely affect those in mid-adolescence and older. It has become apparent, as physicians have become more familiar with symptoms and how they manifest, that young children, toddlers, perhaps even infants, are developing narcolepsy. With this new understanding, physicians have been able to diagnose patients more effectively and efficiently, cutting the time from onset to diagnosis dramatically.