On Saturday, June 15, 2019, over 90 people from across the state of Texas gathered in Austin for the Central Texas Narcolepsy Forum, co-hosted by Project Sleep and the Austin Narcolepsy Support Group. This unique one-day event aimed to empower the community with updates from the forefront of narcolepsy research, treatments, advocacy and awareness.
The day kicked off with introductions and an inspiring presentation by Julie Flygare, J.D., President & CEO of Project Sleep. Flygare shared her journey from facing mysterious symptoms in law school to becoming an author and advocate. She emphasized taking a multidisciplinary approach to treating narcolepsy – highlighting that social support can be important to combat the psychosocial impacts of narcolepsy.
Next, Todd Swick, M.D., Assistant Clinical Professor of Neurology at The University of Texas School of Medicine-Houston and Senior Medical Director of Neurology and Sleep Medical Consultants of Houston, spoke about the newest treatment options for narcolepsy type 1, type 2 and idiopathic hypersomnia. Dr. Swick answered many questions from the audience, while also showing his incredible compassion for and dedication to the community throughout his remarks. Dr. Swick is board certified in neurology and sleep medicine and has close to 4000 patients in his practice and one of the largest narcolepsy practices in Texas.
The Power of Storytelling
After lunch, Flygare provided an overview of the problems facing the narcolepsy community in raising narcolepsy awareness and reducing stigma. She presented storytelling as one of the greatest tools to change perceptions and reduce stigma, according to social science research. This kicked off the interactive workshop portion of the event, with attendees filling out a new “narcolepsy storytelling roadmap” created by Project Sleep and piloted for the first time at this gathering.
As participants filled in the roadmap, volunteers shared their work with the group. “I was surprised by attendees’ willingness to share,” described Flygare. “This was the highlight of my day, as I was so moved and sensed everyone was moved by hearing each others’ stories and perspectives. This was another great reminder that each person’s unique story matters.”
This was a phenomenal experience. So much warmth and connection in the room. Relishing in the togetherness left my heart feeling so full. Also, I’m so grateful that my husband could attend with me. His perspective on what I go through changed dramatically from this experience.
I valued the space created by this event to have safe conversations with my community. I also enjoyed the storytelling workshop and left feeling inspired! It was literally the first time in eight years that I’ve had an opportunity to be present and get familiar with my own narcolepsy. Thank you for visiting Austin and our Texas community!
When Worlds Collide
Another highlight was the fact that Mary Grace, one of our brand-new 2019 Jack & Julie Narcolepsy Scholarship recipients joined us for the event! It was awesome to meet this inspiring awardee in-person. Read Mary Grace’s inspiring story featured in the news here.
Likewise, it was so meaningful that three of our Rising Voices of Narcolepsy trained advocates attended with family members, including two of our RVN trained speakers, Rachel and Estefy and RVN trained writer, Sharon!
The More You Know
Throughout the day, attendees visited exhibitor tables to learn about more ways to get involved in the community. Table sponsors included Avadel Pharmaceuticals, Jazz Pharmaceuticals and Harmony Biosciences. In addition, Project Sleep provided a “communal resource table” for other non-profit organizations to share materials with attendees. Thank you to the KLS Foundation, Narcolepsy Network, and Wake Up Narcolepsy for sharing your materials! Likewise, Project Sleep had a table with our organization’s educational materials, which was also where Flygare signed copies of Wide Awake and Dreaming: A Memoir of Narcolepsy.
Attendees and supporters – you made this day one we will cherish forever! Special thanks to Kami Barron for being the catalyst and lead coordinator who turned this vision into an amazing reality. Thank you to the dynamic duo – Dr. Swick and his wonderful wife Marilyn Swick for joining us for this event and their incredible dedication to this community. Marilyn is also the Director of the award-winning short film about narcolepsy, REM (watch now on Amazon Prime).
Thank you to our venue sponsor, the Center for Nonprofit Studies at Austin Community College, and our lunch sponsor Central Texas Neurology Consultants. Shout out of thanks to Henry Nicholls for generously donating copies of his wonderful book Sleepyhead: The Neuroscience of a Good Night’s Rest, which served as very special event door prizes. And thanks to Christine Forrest, Avadel Pharmaceuticals, Jazz Pharmaceuticals, Harmony Biosciences, KLS Foundation, Narcolepsy Network and Wake Up Narcolepsy for helping to make this event such a success!
Support Our Efforts
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.