On Saturday, Sept. 15, 2018, Project Sleep hosted “Innovations in Narcolepsy Awareness” as a one-day meeting and interactive workshop at the NonProfit Center in Boston, MA. Over 40 people attended the event, including individuals living with health conditions, loved ones, researchers and healthcare experts.
Bringing Design Thinking to Narcolepsy
Your Story Matters
The day kicked off with introductions and a presentation from Julie Flygare, J.D., President & CEO of Project Sleep, sharing her journey with narcolepsy propelling Flygare to become an author and advocate.
Next, Michelle Zagardo gave her inspiring Rising Voices of Narcolepsy presentation, detailing how mysterious symptoms began at a young age, ultimately leading to a diagnosis of narcolepsy with cataplexy 20 years after symptom onset. Zagardo beautifully described that, after diagnosis, living with narcolepsy is not perfect but helped her to access treatment options and find community. To learn more about Michelle’s journey living with narcolepsy in the NYC area, check out her blog.
Flygare closed out the morning session with an overview of narcolepsy awareness, stigma and research indicating that storytelling is one of the greatest tools to change perceptions and reduce stigma.
“Your story is the solution, so how can Project Sleep help you share your story?” -Julie Flygare
Leverage Design Thinking
After lunch, special guest, Nick Dawson, ED of Innovation at Kaiser Permanente, introduced attendees to the concept of “design thinking” – sharing examples of how design thinking has led to significant innovations in healthcare. Then, the interactive portion of the program began with a few visual exercises to warm up everyone’s creative parts of the brain!
Addressing the question “How can Project Sleep help you share your story?” – attendees then broke out into three groups to tackle different aspects of this issue, including:
- Barriers to telling one’s story,
- Motivations for telling one’s story, and
- Spaces where stories are shared.
Dawson walked the teams through an “analogous thinking” exercise toward creating novel solutions to the questions at hand. The energy in the room was invigorating, as post-it notes quickly filled up the white boards. To wrap-up the day, each team “pitched” their favorite concept to the full group.
Participant Reflections
Very Powerful
“I really enjoyed the event and was very impressed with the work you are doing to empower patients to engage with one another, and with the public. The ‘not alone’ message is very powerful. Thanks for sharing it!”
–Janet Mullington, PhD., Professor of Neurology, Harvard Medical School
Wow did I learn a lot
“Sometimes being present IS the gift. I got to spend a day with the Project Sleep community and WOW did I learn a lot about narcolepsy, stigma, awareness, the diagnosis journey, hero moments… what a day! Thank you Project Sleep, for welcoming me and embracing design!”
– Nick Dawson, Executive Director of Innovation, Kaiser Permanente
Huge Impact
“Meeting other people with narcolepsy had a huge impact on my life, made me feel less alone and gives me hope for the future. You guys were all so welcoming and wonderful speakers!”
– Cami, Event Participant
Wonderful Experience
“This was such a wonderful experience! I’m so grateful to have had the opportunity to hear Julie’s and Michelle’s presentations and loved participating in the design thinking exercises with Nick. Not to mention the new friends that I made!”
– Nikki, Event Attendee
Struck by Resilience
“I was struck by the resilience of everyone in the room, particularly those affected directly by narcolepsy. I sensed that every day these individuals are trying fervently to live their best possible lives and to also help others who are struggling.”
– John Novack, Director of Communications, Inspire
A Magical Day
“This was a magical day! As I delivered my first Rising Voices of Narcolepsy presentation, I noticed audience members nodding their heads, smiling and leaning forward with interest. I also really enjoyed meeting so many incredible people with narcolepsy and supporters. You all inspire me to no end.”
– Michelle Zagardo, RVN trained speaker in the NYC area
You Make This Possible
Thank you so much for all those who joined us for this novel event. We learned so much from each of you and hope this is just the first of many design thinking workshops in the narcolepsy and sleep space! Special thanks to our featured speakers – Julie Flygare, Michelle Zagardo and Nick Dawson along with our volunteers, Ciro Di Ruocco and Darrell Hoy for making this event such a success!
As a 501(c)(3) non-profit organization, Project Sleep relies upon contributions from thoughtful individuals who believe in the importance of this cause. Thank you for your generosity – it fuels our passion and ability to make change. Please make a gift today.
Photography by Michelle Zagardo and Darrell Hoy. For more event photos, visit our Facebook Photo Album.
3 Comments. Leave new
I would love to participate in Project Sleep! Unfortunately Narcolepsy leaves many unemployed. FORTUNATELY …I work very part time. I’m a school bus attendant . I’m living on a very low income . SSDI as SsI still deny helping. I believe more people with Narcolepsy are in the same boat. Many want to attend conference or significant events with Project Sleep, but can not afford to travel . I’d love to participate . Question is…….HOW?
[…] 15th: Hosted Project Sleep’s “Innovations in Narcolepsy Awareness” event in Boston, […]
I am a graphic design student with Type 1 Narcolepsy. Right now I am doing research for a PSA ad campaign project about Narcolepsy Awareness. I stumbled across this event flyer from last year and totally wishing I could have known about it then!