Accelerating Narcolepsy Research Together

Since its inception in 2008, Wake Up Narcolepsy (WUN) has donated over $1.39 million to narcolepsy research. We are a nonprofit organization committed to advancing narcolepsy awareness, education, and research. A large part of our mission involves raising and allocating funding to develop improved treatments and ultimately, find a cure.

As we outlined in our recently released impact statement, “WUN aims to develop mechanisms to help support research and to increase the impact of our fundraising.” Our collaboration with the American Academy of Sleep Medicine (AASM) Foundation is just one example of how we do that.

“Our partnership with the AASM Foundation is a powerful step forward in accelerating narcolepsy research,” says Monica Gow, WUN’s founder and executive consultant. “By working together, we’re not only extending our impact, but also increasing the visibility of narcolepsy within the sleep community and beyond.”

In this month’s column, we’ll look at how this partnership began, how it’s going, and what’s in store.

A Partnership Grounded in Shared Goals

The partnership started when WUN’s executive director connected with the AASM Foundation at SLEEP 2021, the annual meeting of the Associated Professional Sleep Societies, LLC (APSS), a joint venture of the AASM and the Sleep Research Society (SRS).

The AASM Foundation recognized our commitment to advancing narcolepsy research and saw an opportunity for us to collaborate through their research program. That first funding cycle, WUN provided a grant of $25,000 toward AASM’s larger Category II Strategic Research Grant, which is earmarked for central disorders of hypersomnolence research.

As part of this partnership, WUN assumed some key responsibilities. Two WUN representatives—our executive director and a board member—were tasked with reviewing the Letters of Intent and making recommendations to the AASM Foundation on which research projects would be most beneficial to the narcolepsy community.

As part of the grant review process, WUN was also required to engage two to three scientists in our community to review and analyze the applications, attend review meetings, and score the applications. These recommendations were carefully considered, and based on them, selected scientists were invited to submit full research applications.

With the recent call for letters of intent for the 2024–25 cycle, WUN is currently in its third year of the partnership. “This collaboration enables us to push the boundaries of research and bring greater awareness to this often misunderstood condition, ultimately improving the lives of those affected,” Gow says.

Funding for the 2022–23 cycle came directly from money WUN had raised through grassroots fundraising efforts. The ongoing partnership was made possible by funding from Avadel Pharmaceuticals in the 2023–24 cycle and from Jazz Pharmaceuticals in the 2024–25 cycle.

“It’s encouraging to see funding being directed toward important projects that address gaps in sleep medicine,” says R. Nisha Aurora, MD, MHS, president of the AASM Foundation. “Collaborating with organizations like Wake Up Narcolepsy can really help advance research in sleep medicine.”

This year, the AASM Foundation’s goal is to invest more than $4 million in its grant and training programs. The AASM Foundation and WUN plan to partner again for the AASM Foundation Strategic Research Grant: Central Disorders of Hypersomnolence.

Funding Research to Change Lives

In addition to our partnership with the AASM Foundation, WUN also offers both unrestricted and restricted grants in the following areas of research:

• Understanding the cause of narcolepsy
• Advancing pharmacological treatment options
• Narcolepsy pediatric screening tools
• Understanding the psychosocial, personal, and professional impact of narcolepsy
• Development of improved diagnostic tools

Applications are accepted throughout the year, and funding ranges anywhere between $2,500 and $50,000. Awardees are required to demonstrate ongoing findings with a detailed final summary to be published within the narcolepsy community and potentially peer-reviewed. Funding has been raised through a variety of initiatives, including our 14 years of Boston Marathon teams, the Seattle Giving Campaign, the End of Year Appeal, and targeted research donations made throughout the year.

Early-stage research funding from WUN can serve as a stepping stone to securing larger research awards. Two notable examples of larger grants secured in this manner include:

• “Mechanisms of Cataplexy,” a $1.5 million multi-year National Institutes of Health (NIH) grant (5R01NS106032, PI: Thomas Scammell, MD)
• “Development and Validation of a Nocturnal Sleep Signature for the Diagnosis of Idiopathic Hypersomnia,” an approximately $500,000 NIH grant (direct costs for 2024) (1R61NS130215, PI: Kiran Maski, MD)

Beyond providing funding, WUN is dedicated to keeping the community informed about the latest research updates, clinical trials, and research opportunities. We share these through our website, social media channels,and our monthly newsletter.

To learn more about WUN’s efforts in advancing narcolepsy research, please visit our featured research page where you’ll find the recently updated Full Impact Statement, Impact Statement Highlights & Publications, and detailed information about different projects we’ve funded. We also have a brief video highlighting WUN’s impact over the years.

By: Cara Weaver

Source: SleepWorld Magazine November/December 2024