The Stories We Share Today Become the World We Live In Tomorrow

I’m thrilled to share Project Sleep’s new narcolepsy awareness video series. These videos feature five of our Rising Voices of Narcolepsy speakers sharing their personal stories, interwoven with key narcolepsy facts. I hope you will be as moved as I am by these brave stories and share them today: WATCH NOW



Why is this work important? 

Did you know? Research indicates that storytelling is one of the most powerful ways to foster empathy, raise awareness and reduce stigma for people with misunderstood conditions like narcolepsy.

It may be easier to share facts and figures, but is this “sticking” with your audience? Sharing our own stories can feel overwhelming and vulnerable. It’s not easy, but I love working with our Rising Voices of Narcolepsy speakers and writers to hone in the elements of their story that will help build empathy and create memorable moments in the minds of audiences.  In the Rising Voices of Narcolepsy training, we also include narcolepsy information, but we fold this in carefully alongside storytelling, for greater impact. 

Why is this so emotional for me personally?

People often ask me if and when I’ll write another book. I’m honestly not sure, but I DO know that the chapters following the finish line of the Boston Marathon have been a wild ride, and most recently – totally surreal and deeply meaningful.

To go from sharing my own story to helping others share their stories — it is a dream come true for me. There is a lot of creativity in this work too, it’s just different and more behind-the-scenes, which I like as an introvert. 

Why share OTHER people’s stories?

Now, I don’t have any research to back up this claim, but I find that sometimes it can be more effective for our loved ones to hear about someone else’s experience with narcolepsy. I have no clue why, but it’s been my experience that some people might be skeptical when I describe something, but when they hear another person or two describe the same thing, it starts to resonate or sink in. Have you ever noticed that?

Make a difference today!

So, next time someone asks you “what’s it like living with narcolepsy?” – you can direct this person to the video that resonates the most with your experience. These videos are a new resource available to you at any time to help you share YOUR experience, just with a little help from Lisa, Michelle, Estefy, Shannon, and Grisel! 

What is Rising Voices of Narcolepsy? 

It’s a lot more than these videos. It’s actually a leadership training program for people with narcolepsy to effectively share their story to raise awareness and reduce stigma for all those facing narcolepsy. This video series offers just a few examples of our amazing trained advocates across the country and around the world. Request a speaker for your event or a writer for your publication.

Interested in participating? 

Project Sleep will host our third Rising Voices of Narcolepsy trainings during the summer of 2019. This starts as an initial month-long intense training, one should expect to set aside 2-4 hours each week over the course of the month. Participants do weekly assignments on their own time and turn these assignments in for staff review. There are also video meeting opportunities to ask questions “live” and gain support from fellow participants. Interested individuals would complete an application starting mid-February 2019Learn more.

Thank you for your support!

To me, this video project exemplifies the importance of each person’s unique journey and the power of community. I feel honored every day to work with such incredible individuals – from our Rising Voices of Narcolepsy advocates to the behind-the-scenes creative experts (the real magicians), to our supporters and donors who make this progress possible.

Serving this community through Project Sleep’s sleep advocacy and awareness efforts continues to be the joy and honor of my lifetime. Thank you for your trust and support! 

Please share these videos with your friends and family to help us reduce stigma and raise critical awareness about narcolepsy worldwide.

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