Oct 10 2025
Wake Up Narcolepsy Inaugural Bridging Perspectives Convening Recap

The inaugural Wake Up Narcolepsy (WUN) Bridging Perspectives Convening took place on September 26th at the Aloft Boston Seaport District!

Photography: Brock Barton

Featured panelists, WUN board members and staff

The event was designed to bring together different voices within the Narcolepsy community in a way that cultivated collaboration and increased understanding. Attendees varied from those living with the disorder, their loved ones, healthcare professionals and industry members. 

One of the key pieces of the gathering was the insights from our wonderful online support group facilitators. They were able to share personal experiences while also touching on common misconceptions, concerns and sentiments they hear each week in groups. This, paired with the expertise of other featured panelists, led to truly engaging conversations about meaningful change.

The morning opened with an impactful video featuring three support group leaders. Shelly and Dom weren’t able to attend in person but we appreciate them sharing openly and still being part of the special day. We are glad Kelsey was able to join us. The video is available on the WUN YouTube channel.

Discussions focused on the entire journey one goes through, starting with “Developing Narcolepsy Symptoms & Navigating Change” with Lisa Rose, Madie Behrends, Elaine Gregory, Dr. Mignot and Anne Samarawickrama. This led into “Inside the Narcolepsy Diagnostic Journey” with Kelsey Biddle, MD, David Gow, Brina-Hope, Dr. Scammell and Rorey Smith. 

After a short lunch break, “Understanding Narcolepsy Treatment Access & Barriers” featuring Todd Grisco, Tessa Appleman, Emily Clegg Barker, PhD, Dr. Ingram and Dr. Maski, rounded out the panels for the day. 

Photography: Brock Barton

Left: Panel 1; Middle: Panel 2; Right: Panel 3

Next, Dr. Morse led an interactive “Community Collaboration for Change” workshop. This was followed by breakout sessions exploring where panelists are today and how journeys aren’t always linear.

The day closed out with an exhibitor showcase, where attendees could visit industry and community tables to ask questions, and a reception where conversations continued and connections formed.

The impact of this inaugural event was clear throughout the day and expressed by attendees, speakers and industry members alike. 

Photography: Brock Barton

Left: Dr. Morse’s interactive workshop; Right: WUN support group leaders on a trolley tour of Boston

Thank You to our Sponsors!

Platinum Sponsors – Avadel Pharmaceuticals

Visionary Sponsors – Takeda & Harmony Biosciences

Innovator Sponsors – Jazz Pharmaceuticals

Supporter Sponsors – Alkermes, Axsome Therapeutics & Centessa Pharmaceuticals

Thank you also to:

All of our amazing speakers, online support group facilitators, volunteers, board members, as well as Events by Alli C, Brock Barton for photography and the Aloft Boston Seaport District for hosting us!