Dr. Anne Marie Morse Previews Wake Up Narcolepsy's Inaugural Shadows To Light Gala

This coming Friday, September 20, Wake Up Narcolepsy, a non-profit dedicated to raising awareness for narcolepsy, will host its inaugural Shadows To Light Gala 2024. The event will feature an educational forum preceding the gala, a live and silent auction, as well as dinner and plenty of entertainment. In anticipation of this event, sleep expert Dr. Anne Marie Morse detailed all aspects of gala, and how it can drive awareness and education toward patients, providers, and families dealing with narcolepsy.

On September 20, Wake Up Narcolepsy (WUN) will host its inaugural Shadows to Light Gala. Talk to us about WUN, and the significance of this Gala.

Wake Up Narcolepsy is an incredible organization that is dedicated to not only advocacy around the condition of narcolepsy, but also its commitment to expanding the amount of research, not only studying this disorder, but also available treatments in the discovery of new treatments.

It has over a 15-year history, it actually had just celebrated 15 years in existence, and it is an organization that is founded by parents of children who have the condition of narcolepsy. This organization is dedicating this evening, actually it’s a full day, to increasing awareness and education and trying to identify new things that we should be researching.

The day will kick off with an educational forum that I am privileged to be able to chair and is including a panel of thought leaders as well as individuals who are living with narcolepsy in the first hour where we’ll be unpacking what is the lived experience like, where is there opportunities for us to be able to just do better.

In the second hour, we are going to be really unpacking the other component that really is accountable to how well we can improve the journey for individuals living with narcolepsy. What do I mean? This hour is going to be incredibly unique. I have to say that I have yet to have attended a forum that includes this. What am I talking about?

Well, we’re going to be having this conversation with the payer side of the conversation. We’re going to be speaking with one of the past CMOs of Centene, one of the largest Medicaid products in the United States, as well as one of the biggest PBMs, which is Prime Therapeutics and their CEO.

This introduces the opportunity as opposed to the typical shame and blame type of conversations to how do we stack hands and establish what the opportunity is for moving forward. So when I say that there’s going to be the generation of novel ideas to be able to lead to further discovery of how we can improve the lives of people living with narcolepsy, it’s no joke. We are definitely getting to the meat of the situation.

Now, the event does not stop there. It of course, is one heck of a kickoff, but the meat and potatoes of the remainder of the evening is going to be surrounding the educational gala. And although those two terms sound like they shouldn’t be in the same sentence, they very much are.

And the reason why I say that is because it is a celebration of where we’ve come in regards to what we’re able to do for people who are living with narcolepsy and all that wake up narcolepsy has contributed to this space.

However, it is also going to be very much filled with information that is going to allow for people to understand what has been occurring, what does narcolepsy look like, what is it like for a child and a family to navigate that. We also will be very lucky to be able to celebrate some specific individuals who have contributed to this space as well as just to the healthcare space in general.

Verzweigen Haft is a very accomplished individual who has done tremendous things in the healthcare space in general, developing some of the most incredible specialty pharmacies as well as contributing to the oncology side of things, but also making it so that there is greater access to medications. So he’ll be awarded the Trailblazer Award.

Kieran Maskey, who is an incredible child neurologist and sleep medicine specialist at Boston Children’s, is going to receive the Research Award. And this is definitely something that she has incredibly earned for her contributions to narcolepsy, but also specifically pediatric narcolepsy.

And I am incredibly humbled to be able to be receiving the Patient Advocacy Award. I have very much committed my career even before becoming a physician back even when I was a medical student, to really making sure that the patient’s voice is heard and not just heard, but listened to and incorporated and responded to.

So it really is incredibly humbling and full circle for me to be able to participate in this very meaningful event in so many different ways, but also to be experiencing the opportunity of being rewarded with such a thing. And I would be amiss to not acknowledge the final award, which really is one that unfortunately has been earned.

And I say unfortunate because I don’t wish anyone to be experiencing any chronic medical disease journey. But this family has done this with really such style and grace and Lynn Grisco will probably smile when she hears me say style and grace because she really does this on a daily basis.

But Mia Grisco, who is an incredible young woman, is living her journey with narcolepsy, but doing so very successfully. She’s starting her first year college, and I have been privileged to be a part of that journey alongside with Karen Maskey. And being able to see her flourish from someone who was struggling in high school because of the condition that she developed, to someone who is going to be kicking butt in her first year of college.

She’s living there independently and I expect nothing but amazing things from her and I’m looking to continue to partner. Lynn Todd and Mia and Blake are an incredible family that really are demonstrating what it’s like to live as a mission family.