Welcome! Meet our brave Rising Voices of Narcolepsy speakers sharing their stories to raise awareness about narcolepsy. These short videos offer quick previews of the full-length videos below.
Rising Voices of Narcolepsy Video Series
Introducing Our Speakers
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Introducing Rising Voices of Narcolepsy | Julie Flygare, Project Sleep
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Meet Lisa | Rising Voices of Narcolepsy Speaker Series
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Meet Michelle | Rising Voices of Narcolepsy Speaker Series
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Meet Estefy | Rising Voices of Narcolepsy Speaker Series
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Meet Shannon | Rising Voices of Narcolepsy Speaker Series
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Meet Grisel | Rising Voices of Narcolepsy Speaker Series
Our Stories of Narcolepsy
While our Rising Voices of Narcolepsy speakers deliver in-person presentations across the U.S. and internationally, this video series brings a few of our speakers’ stories to the comfort of your home to reach more people worldwide. Enjoy & share!
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Lisa's Story Part I: I Have Narcolepsy | Rising Voices of Narcolepsy Speaker Series
At age 11, sleepiness started interfering in Lisa's school life. Laughter began turning her body into jelly and the "Shadow Man" visited at night.
This is a real-life example of a person developing type 1 narcolepsy with cataplexy at a child and young teenager, and how she interpreted the symptoms.
ABOUT LISA: Lisa is a producer, student of political sciences and technology enthusiast from London, UK. As a trained speaker with Project Sleep's Rising Voices of Narcolepsy program, Lisa is sharing her story to raise awareness of what it’s really like to live with this chronic neurological condition.
RISING VOICES OF NARCOLEPSY is a leadership training program of the non-profit Project Sleep, aiming to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering educational 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to record their presentations for this video series, so that their stories can reach more people around the world.
SHARE THESE VIDEOS to raise critical awareness.
Get Involved : https://project-sleep.com/rising-voices-of-narcolepsy
Request a Rising Voices of Narcolepsy speaker for your event or writer for your publication: https://project-sleep.com/rising-voices-of-narcolepsy -
Lisa's Story Part II: Diagnosed with Narcolepsy | Rising Voices of Narcolepsy Speaker Series
Lisa received a diagnosis of type 1 narcolepsy with cataplexy at age 23, about 12 years after her symptoms began.
In this video, Lisa shares how her experience fits into the basic fact information about narcolepsy symptoms, diagnosis, treatment options and lifestyle adjustments.
ABOUT LISA: Lisa is a producer, student of political sciences and technology enthusiast from London, UK. As a trained speaker with Project Sleep's Rising Voices of Narcolepsy program, Lisa is sharing her story to raise awareness of what it’s really like to live with this chronic neurological condition.
RISING VOICES OF NARCOLEPSY is a leadership training program developed by the non-profit Project Sleep, aiming to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering educational 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to record their presentations for this video series, so that their stories can reach more people around the world.
SHARE THESE VIDEOS to raise critical awareness.
Get Involved : https://project-sleep.com/rising-voices-of-narcolepsy
Request a Rising Voices of Narcolepsy speaker for your event or writer for your publication: https://project-sleep.com/rising-voices-of-narcolepsy -
Lisa's Story Part III: Managing Narcolepsy | Rising Voices of Narcolepsy Speaker Series
Learn how Lisa has made improvements to her life and why she's sharing her story.
ABOUT LISA: Lisa is a producer, student of political sciences and technology enthusiast from London, UK. As a trained speaker with Project Sleep's Rising Voices of Narcolepsy program, Lisa is sharing her story to raise awareness of what it’s really like to live with this chronic neurological condition.
RISING VOICES OF NARCOLEPSY is a leadership training program developed by the non-profit Project Sleep, aiming to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering educational 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to record their presentations for this video series, so that their stories can reach more people around the world.
SHARE THESE VIDEOS to raise critical awareness.
Get Involved : https://project-sleep.com/rising-voices-of-narcolepsy
Request a Rising Voices of Narcolepsy speaker for your event or writer for your publication: https://project-sleep.com/rising-voices-of-narcolepsy -
Shannon's Story Part I: Shocked by Narcolepsy | Rising Voices of Narcolepsy Speaker Series
In her late 20s, Shannon started feeling unusually sleepy, forgetful and clumsy.
ABOUT SHANNON: Shannon has a background in healthcare and business and lives in Wisconsin with her husband and teenage daughter. Shannon was diagnosed with narcolepsy and cataplexy in 2010, and she is sharing her story to raise awareness about this misunderstood and complicated neurological disorder.
RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering educational 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their stories can reach more people around the world.
SHARE this video to raise critical narcolepsy awareness!
Learn more and get involved : https://project-sleep.com/rising-voices-of-narcolepsy
Request a Rising Voices of Narcolepsy speaker for your event or writer for your publication: https://project-sleep.com/rising-voices-of-narcolepsy -
Shannon's Story Part II: Real-Life Narcolepsy | Rising Voices of Narcolepsy Speaker Series
Unlike public perceptions, taking daily naps is not a luxury. Shannon describes her experience managing symptoms.
ABOUT SHANNON: Shannon has a background in healthcare and business and lives in Wisconsin with her husband and teenage daughter. Shannon was diagnosed with narcolepsy and cataplexy in 2010, and she is sharing her story as a Rising Voices of Narcolepsy trained speaker to raise awareness about this misunderstood and complicated neurological disorder.
RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering educational 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their stories can reach more people around the world.
SHARE this video to raise critical narcolepsy awareness!
Learn more and get involved : https://project-sleep.com/rising-voices-of-narcolepsy
Request a Rising Voices of Narcolepsy speaker for your event or writer for your publication: https://project-sleep.com/rising-voices-of-narcolepsy -
Shannon's Story Part III: Advocating for Narcolepsy | Rising Voices of Narcolepsy Speaker Series
While adjusting to narcolepsy, Shannon received life-changing advice from a friend.
In this video, learn how Shannon embarked on a new path toward becoming an empowered narcolepsy and rare disease advocate.
ABOUT SHANNON: Shannon has a background in healthcare and business and lives in Wisconsin with her husband and teenage daughter. Shannon was diagnosed with narcolepsy and cataplexy in 2010, and she is sharing her story as a Rising Voices of Narcolepsy trained speaker to raise awareness about this misunderstood and complicated neurological disorder.
RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering educational 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their stories can reach more people around the world.
SHARE this video to raise critical narcolepsy awareness!
Learn more and get involved : https://project-sleep.com/rising-voices-of-narcolepsy
Request a Rising Voices of Narcolepsy speaker for your event or writer for your publication: https://project-sleep.com/rising-voices-of-narcolepsy -
Estefy's Story Part I: Could I have Narcolepsy? | Rising Voices of Narcolepsy Speaker Series
"All medical students are sleep deprived, right?" Estefy started having trouble memorizing materials while in medical school.
ABOUT ESTEFY: Estefy was in medical school when she was diagnosed with type 2 narcolepsy without cataplexy in 2016, and she hopes to help dispel misconceptions about this misunderstood neurological condition by sharing her story as a trained speaker with Project Sleep's Rising Voices of Narcolepsy program. In her presentation, she shares what it was like to be a medical student with an unexpected diagnosis of narcolepsy.
RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking. Learn more and get involved : https://project-sleep.com/rising-voices-of-narcolepsy
*****SHARE this video to raise critical awareness!***** -
Estefy's Story Part II: Basic Facts about Narcolepsy | Rising Voices of Narcolepsy Speaker Series
"Narcolepsy can look different for everyone." Estefy describes her type 2 narcolepsy without cataplexy diagnosis.
In addition, she explains about narcolepsy symptoms, treatments, and her journey toward finding her best treatment options and lifestyle adjustments.
ABOUT ESTEFY: Estefy was in medical school when she was diagnosed with type 2 narcolepsy without cataplexy in 2016, and she hopes to help dispel misconceptions about this misunderstood neurological condition by sharing her story as a trained speaker with Project Sleep's Rising Voices of Narcolepsy program. In her presentation, she shares what it was like to be a medical student with an unexpected diagnosis of narcolepsy.
RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking. Learn more: https://project-sleep.com/rising-voices-of-narcolepsy -
Estefy's Story Part III: Adjusting to Narcolepsy | Rising Voices of Narcolepsy Speaker Series
Estefy opened up to friends about narcolepsy, and was surprised by their reactions. Now, she is studying data science in grad school.
ABOUT ESTEFY: Estefy is an ex-medical student now studying data science. She was diagnosed with narcolepsy in 2016, and she hopes to help dispel misconceptions about this misunderstood neurological condition by sharing her story as a trained speaker with Project Sleep's Rising Voices of Narcolepsy program. In her presentation, she shares what it was like to be a medical student with an unexpected diagnosis of narcolepsy.
RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their stories can reach more people around the world.
SHARE this video to raise critical awareness!
Learn more and get involved : https://project-sleep.com/rising-voices-of-narcolepsy
Request a Rising Voices of Narcolepsy speaker for your event or writer for your publication: https://project-sleep.com/rising-voices-of-narcolepsy -
Michelle's Story Part I: Developing Narcolepsy | Rising Voices of Narcolepsy Video Series
Michelle started feeling a heaviness at a young age. She began losing her grip on her tennis racket. One day, she awoke to a strange man outside her bedroom.
Michelle visited multiple doctors and received several misdiagnoses before finding a neurologist who would change her life.
ABOUT MICHELLE: Michelle is a designer, photographer, and gummy bear enthusiast living in Connecticut. She was diagnosed with type 1 narcolepsy with cataplexy after 20 years with the condition. As a trained speaker with Project Sleep's Rising Voices of Narcolepsy program, she hopes to spread awareness and help others get diagnosed.
RISING VOICES OF NARCOLEPSY is a leadership training program developed by the non-profit Project Sleep, aiming to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our speakers are delivering 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to share their presentations via this video series, so that their stories can reach more people around the world.
Please share to help raise critical narcolepsy awareness!
Get Involved : https://project-sleep.com/rising-voices-of-narcolepsy
Request a Rising Voices of Narcolepsy speaker for your event or writer for your publication: https://project-sleep.com/rising-voices-of-narcolepsy -
Michelle's Story Part II: What is Narcolepsy? | Rising Voices of Narcolepsy Speaker Series
Michelle was surprised by her narcolepsy diagnosis. She explains how she learned about the symptoms and science.
Major symptoms of narcolepsy include:
- excessive daytime sleepiness
- cataplexy
- hypnagogic hallucinations
- sleep paralysis
- disrupted nighttime sleep
Likewise, Michelle describes the two forms of narcolepsy, the diagnosis process, current treatment options and other coping strategies.
ABOUT MICHELLE: Michelle is a designer, photographer, and gummy bear enthusiast living in Connecticut. She was diagnosed with type 1 narcolepsy with cataplexy after 20 years with the condition. As a trained speaker with Project Sleep's Rising Voices of Narcolepsy program, she hopes to spread awareness and help others get diagnosed.
RISING VOICES OF NARCOLEPSY is a leadership training program developed by the non-profit Project Sleep, aiming to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering educational 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their stories can reach more people around the world.
SHARE this video to raise critical narcolepsy awareness!
Learn more and get involved : https://project-sleep.com/rising-voices-of-narcolepsy
Request a Rising Voices of Narcolepsy speaker for your event or writer for your publication: https://project-sleep.com/rising-voices-of-narcolepsy -
Michelle's Story Part III: Living with Narcolepsy | Rising Voices of Narcolepsy Speaker Series
How did loved ones react to her diagnosis? Learn how Michelle launched a fashion brand and went to Capitol Hill with Project Sleep.
ABOUT MICHELLE: Michelle is a designer, photographer, and gummy bear enthusiast living in Connecticut. She was diagnosed with type 1 narcolepsy with cataplexy after 20 years with the condition. As a trained speaker with Project Sleep's Rising Voices of Narcolepsy program, she hopes to spread awareness and help others get diagnosed.
RISING VOICES OF NARCOLEPSY is a leadership training program developed by the non-profit Project Sleep, aiming to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers deliver in-person 20-minute presentations to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their inspiring stories can reach more people around the world. SHARE this video to raise critical narcolepsy awareness!
Learn more and get involved : https://project-sleep.com/rising-voices-of-narcolepsy
Request a Rising Voices of Narcolepsy speaker for your event or writer for your publication: https://project-sleep.com/rising-voices-of-narcolepsy -
Grisel's Story Part I: Symptoms of Narcolepsy | Rising Voices of Narcolepsy Speaker Series
Grisel's troubles started in the classroom. Then one morning, when Grisel's mom tried to wake her, she couldn't move.
ABOUT GRISEL: Grisel received her Bachelor of Arts from Florida International University (FIU) in Psychology and with a minor in education in 2017, and is now pursuing her masters degree in Counseling Psychology with a concentration in mental health. Diagnosed with narcolepsy in 2016, Grisel is now raising awareness by sharing her experience as a speaker in Project Sleep’s Rising Voices of Narcolepsy program. In her free time, Grisel enjoys playing the violin, journaling, photography, and spending time with her family.
RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their stories can reach more people around the world.
SHARE this video to raise critical awareness!
Learn more and get involved : https://project-sleep.com/rising-voices-of-narcolepsy
Request a Rising Voices of Narcolepsy speaker for your event or writer for your publication: https://project-sleep.com/rising-voices-of-narcolepsy -
Grisel's Story Part II: Learning about Narcolepsy | Rising Voices of Narcolepsy Speaker Series
A close friend suggested Grisel see a sleep doctor. Her response may surprise you.
Eventually, Grisel saw a sleep specialist and was diagnosed with narcolepsy. In this video, Grisel answers questions including:
- How common is narcolepsy?
- What are the symptoms of narcolepsy and cataplexy?
- Are there good treatments for narcolepsy? What about a cure?
ABOUT GRISEL: Grisel received her Bachelor of Arts from Florida International University (FIU) in Psychology and with a minor in education in 2017, and is now pursuing her masters degree in Counseling Psychology with a concentration in mental health. Diagnosed with narcolepsy in 2016, Grisel is now raising awareness by sharing her experience as a speaker in Project Sleep’s Rising Voices of Narcolepsy program. In her free time, Grisel enjoys playing the violin, journaling, photography, and spending time with her family.
RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their stories can reach more people around the world.
SHARE this video to raise critical awareness!
Learn more and get involved : https://project-sleep.com/rising-voices-of-narcolepsy
Request a Rising Voices of Narcolepsy speaker for your event or writer for your publication: https://project-sleep.com/rising-voices-of-narcolepsy -
Grisel's Story Part III: My Story with Narcolepsy | Rising Voices of Narcolepsy Speaker Series
Getting accommodations in college was an important part of Grisel's journey. Now, Grisel is pursuing graduate school.
ABOUT GRISEL: Grisel received her Bachelor of Arts from Florida International University (FIU) in Psychology and with a minor in education in 2017, and is now pursuing her masters degree in Counseling Psychology with a concentration in mental health. Diagnosed with narcolepsy in 2016, Grisel is now raising awareness by sharing her experience as a speaker in Project Sleep’s Rising Voices of Narcolepsy program. In her free time, Grisel enjoys playing the violin, journaling, photography, and spending time with her family.
RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their stories can reach more people around the world.
SHARE this video to raise critical awareness!
Learn more and get involved : https://project-sleep.com/rising-voices-of-narcolepsy
Request a Rising Voices of Narcolepsy speaker for your event or writer for your publication: https://project-sleep.com/rising-voices-of-narcolepsy
Candid Conversations
Join our Rising Voices of Narcolepsy speakers and Julie Flygare, President & CEO of Project Sleep, for some honest “real talk” on aspects of living with narcolepsy that often go unspoken.
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Narcolepsy & Relationships | Candid Conversations with Rising Voices of Narcolepsy
How to respond when someone tells you they have narcolepsy? When do you share you have narcolepsy?
The Rising Voices of Narcolepsy speakers share a candid conversation on dating, romantic relationships and friendships.
RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their stories can reach more people around the world. SHARE this video to raise critical awareness!
Learn more and get involved : https://project-sleep.com/rising-voices-of-narcolepsy
Video recorded: September 2018 -
Not Alone with Narcolepsy | Candid Conversations with Rising Voices of Narcolepsy
Some of us craved connection, others were reluctant to meet fellow people with narcolepsy.
In this video, our Rising Voices of Narcolepsy speakers and Julie Flygare, Project Sleep's President & CEO and woman living with narcolepsy, talk about their path to finding the power of community. Each person's journey is so unique.
RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their stories can reach more people around the world. SHARE this video to raise critical awareness!
Learn more and get involved : https://project-sleep.com/rising-voices-of-narcolepsy -
What is Narcolepsy?
Narcolepsy: Stereotypes vs. Reality | Rising Voices of Narcolepsy Speaker Series
"Narcolepsy doesn't just look like a guy falling asleep with his head in his cereal bowl."
-Estefy, RVN Speaker
People developing narcolepsy may not recognize that they could have narcolepsy, in part due to portrayals of narcolepsy in movies like Rat Race, Deuce Bigalow Male Gigolo, Moulin Rouge, My Private Idaho, and on TV in shows like The Simpsons and Modern Family. How do these compare to the real symptoms?
Rising Voices of Narcolepsy advocates share basic narcolepsy symptoms and why they are sharing their stories to raise awareness. Common symptoms of narcolepsy include:
- excessive daytime sleepiness
- cataplexy
- hypnagogic and hypnopompic hallucinations
- sleep paralysis
- disrupted nighttime sleep
RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their stories can reach more people around the world. SHARE this video to raise critical awareness!
Learn more and get involved : https://project-sleep.com/rising-voices-of-narcolepsy
Video recorded: September 2018 -
Introducing Rising Voices of Narcolepsy | Julie Flygare, Project Sleep
At first, Julie wanted to push narcolepsy out of her life, but then she thought maybe her story could help make change.
In this video, Project Sleep's President & CEO and woman living with narcolepsy, Julie Flygare, JD, introduces the Rising Voices of Narcolepsy video series and speakers Shannon, Grisel, Estefy, Michelle and Lisa share what they've found rewarding about their participation in the program so far.
RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their stories can reach more people around the world. SHARE this video to raise critical awareness!
Learn more and get involved : https://project-sleep.com/rising-voices-of-narcolepsy
Video recorded: September 2018
Spread the Word
Rising Voices of Narcolepsy is a program of the non-profit, Project Sleep, training people with narcolepsy to share their stories through public speaking and writing.
- Share with friends and family! Use #Narcolepsy and tag us (@project_sleep).
- Interested in becoming a Rising Voices of Narcolepsy advocate? Learn more.
- Request an in-person speaker to present to your group! Fill out this form.
Building a Brighter Future
Please join Project Sleep to raise more awareness, empower more advocates and create more innovative resources. Thank you for supporting our efforts, together we are building a brighter future.