For nearly 40 years, Narcolepsy Network’s Annual Conference has been the premier event for people living with narcolepsy or idiopathic hypersomnia (IH) and their supporters. The program is thoughtfully curated to address timely topics, and it features some of the most influential experts in sleep medicine. Attendees gain groundbreaking insights designed to promote wakefulness and improve quality of life. The diverse agenda, combined with a compassionate and welcoming community, ensures meaningful experiences for all — whether newly diagnosed or living with narcolepsy for years.

“We expect this year’s conference will be especially impactful, as more groundbreaking research and new knowledge about narcolepsy and IH are emerging now than ever before,” said Amy Kant, transition director, Narcolepsy Network. “Many individuals living with narcolepsy and IH face significant challenges and they deserve better. I am inspired by the potential of this research and hold hope for new treatments to promote greater wakefulness for our community members.”

More than a conference: A community experience

In addition to education, the conference offers numerous opportunities for connection, support and self-care, including:

• Peer-led support groups and journey mapping
• Opportunities to have questions answered by leading experts in the field of sleep
• Access to pharmaceutical representatives for Q&A and information
• Social events, shared meals, and dedicated wellness spaces such as sleep and creativity rooms

Gratitude to our sponsors

Narcolepsy Network is grateful to the generous sponsors who make the 38th Annual Conference possible:

• Gold – Avadel, Harmony Biosciences, Takeda
• Silver – Jazz Pharmaceuticals
• Bronze – Alkermes

About narcolepsy and IH

Narcolepsy and IH are rare neurological sleep disorders that cause excessive daytime sleepiness and disrupt daily life. Narcolepsy may also include sudden muscle weakness, sleep paralysis and vivid dreams, while IH involves excessive daytime sleepiness, prolonged sleep and difficulty waking and staying awake, along with sleep inertia. Narcolepsy affects about 1 in 2,000 people in the U.S., with far fewer diagnosed with IH. However, both conditions are widely underrecognized, with studies showing up to 50% of people with narcolepsy — and an even higher percentage with IH — remain undiagnosed. You can read more about narcolepsy and IH here.

About Narcolepsy Network

Founded in 1986, Narcolepsy Network is a 501(c)(3) nonprofit supporting people with narcolepsy, IH, and related sleep disorders through education, advocacy, support and community-building.

To register or learn more about the Annual Conference, visit http://narcolepsyconference.org.

Media Contact: Jennifer Fugel

Email: jfugel@narcolepsynetwork.org

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Bridging Perspectives leans into more than 15 years of Wake Up Narcolepsy’s relationship building amongst key constituents, including people with narcolepsy or idiopathic hypersomnia, treatment researchers, clinical providers, support group leaders, family members and industry professionals. Quite literally, we are bridging perspectives and experiences. Let’s learn from one another and drive change.

Learn more about Wake Up Narcolepsy’s upcoming event, Bridging Perspectives Convening 2025, on Sept. 26 in Boston and secure a spot today.

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Empowering Through Education and Community

Project Sleep brings people together through events, campaigns, and programs that foster connection, knowledge, and action. Here’s a closer look at some of their standout initiatives:

Rising Voices: Sharing Stories, Raising Awareness

The Rising Voices program trains individuals with sleep disorders to become powerful advocates and storytellers. Participants learn to effectively communicate their experiences to healthcare providers, schools, local communities, and the media. It’s all about reducing stigma and shining a light on real stories.

Applications for this year’s Rising Voices training are now open! The 2025 summer training will be online from June 15 to July 20. Applications are due April 15. Enrolling in the program requires a $75 tuition fee. We welcome all applicants regardless of ability to pay.

Learn more or apply: project-sleep.com/rising-voices

Narcolepsy Nerd Alert: Knowledge is Power

Navigating life with narcolepsy can be overwhelming. That’s why Project Sleep launched Narcolepsy Nerd Alert, a dynamic educational series covering everything from treatment tips to managing social situations. Each topic kicks off with a live broadcast and is followed by downloadable toolkits, podcasts, and social media resources—perfect for all types of learners.

Explore the series: project-sleep.com/narcolepsy-nerd-alert

Sleep Apnea Squad: Support and Insights

Similar to the Nerd Alert series, the Sleep Apnea Squad offers educational content tailored for people living with sleep apnea and their loved ones. This series helps demystify the medical journey while addressing the daily challenges and social dynamics of living with sleep apnea.

Check it out: project-sleep.com/sleep-apnea-squad

Join the Movement for Sleep Health

Project Sleep is changing the way we talk about sleep—by making it personal, inclusive, and empowering. Whether you live with a sleep disorder or simply want to learn more about how sleep impacts health and wellness, there’s a place for you in this community.

Stay connected:

• Visit: project-sleep.com

• Follow us on social media

• Reach out: info@project-sleep.com

Let’s make sleep health a priority for everyone—because good sleep changes everything.

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The bill, sponsored by Councilman Shaun Abreu, establishes a three-year pilot program to offer free obstructive sleep apnea (OSA) screenings and at-home sleep tests, with a focus on uninsured individuals. It will be accompanied by a public education campaign, “More Than a Snore,” to raise awareness about OSA symptoms. The bill becomes law June 15.

Key details of the new law

The bill requires the New York City Department of Health and Mental Hygiene, or another designated agency, to oversee the program. The program will offer free access to OSA screenings and, if deemed appropriate, home sleep apnea tests. Special emphasis will be placed on prioritizing people without insurance. DOHMH will also publish a report to evaluate the program’s effectiveness and determine whether it should become permanent.

As part of the law, a public education and outreach campaign will also be launched. The goal of this initiative is to educate New Yorkers about OSA, its symptoms, and the availability of the free screenings. The campaign is designed to help residents identify OSA early and seek the necessary treatment.

Councilman Abreu also introduced a bill to establish a pilot program to provide OSA treatment at no cost, requiring DOHMH to provide FDA-cleared oral appliances to patients. This bill has not yet been enacted into law.

Understanding obstructive sleep apnea

OSA is a common sleep disorder where the airway becomes partially or fully blocked during sleep. This leads to frequent pauses in breathing, which disrupts sleep quality. Symptoms of OSA include loud snoring, choking or gasping for air during sleep, and feeling excessively tired during the day, even after a full night’s rest.

If left untreated, OSA can increase the risk of serious health problems, such as high blood pressure, heart disease and stroke. It can also lead to daytime fatigue, poor concentration and an increased likelihood of accidents. Early diagnosis and treatment are key to improving health outcomes.

Benefits of treating sleep apnea

Treating OSA can significantly improve sleep quality and overall health. Common treatments include CPAP therapy, oral appliances and lifestyle changes. Many people with OSA find that these treatments help reduce daytime sleepiness, improve mood and increase productivity.

How to get help

The new NYC program offers a great opportunity for residents to receive free screenings and raise awareness about this common but often underdiagnosed condition. If you suspect you have OSA, it’s important to speak with a health care professional. The AASM provides a helpful conversation guide for talking to your doctor about OSA.

Anyone who has a sleep problem can use the AASM’s sleep center directory to get help from the sleep team at an accredited sleep center.

For more information on OSA and treatment options, visit AASM’s resources on sleep apnea. For additional patient support, contact the American Sleep Apnea Association or Alliance of Sleep Apnea Partners.

Related:

• Sleep apnea is ‘more than a snore’
• Untreated sleep apnea puts heart health at risk
• Six facts about sleep apnea

Authored by: Kate Robards

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The American Heart Association and the NFL Alumni Association have teamed up to highlight ways to boost heart health. By sharing the experiences of NFL players, they aim to inspire others to embrace a heart-healthy lifestyle, which includes one critical factor: sleep.

Why sleep matters for heart health

Sleep isn’t just about feeling rested — it’s a vital component of heart health. When you sleep, your body goes through essential processes that help regulate heart rate, blood pressure and inflammation levels. Consistently missing sleep or dealing with untreated sleep disorders disrupts these processes, putting extra strain on your heart.

One major concern is obstructive sleep apnea (OSA) — a condition where breathing repeatedly stops and starts during sleep. This forces the heart to work harder, contributing to increased blood pressure, irregular heart rhythms and reduced oxygen levels in the blood. Over time, this can lead to serious heart issues, including stroke and heart failure. Research shows that severe, untreated OSA more than doubles the risk of dying from heart disease.

The good news? CPAP therapy, the most common treatment for OSA, can dramatically improve sleep quality, restore oxygen flow and reduce the strain on the heart. Studies have found that CPAP therapy not only enhances overall health but also helps lower blood pressure and reduce the risk of cardiovascular events.

Beyond treating sleep disorders, getting enough quality sleep is key to maintaining heart health. The American Academy of Sleep Medicine recommends adults get 7 or more hours of sleep each night.

Lessons from NFL players on sleep

NFL alumni like Aaron Taylor and Josh Andrews have spoken openly about their experiences with sleep disorders. Taylor, a Super Bowl champion, was diagnosed with OSA. Once he sought treatment, he found his energy levels and overall well-being improved significantly.

Andrews was diagnosed with narcolepsy — a chronic sleep disorder characterized by the inability to control normal sleep/wake cycles. By effectively managing the sleep disorder, he’s been able to maintain his performance on the field while supporting his long-term health.

Their stories show that addressing sleep problems isn’t about toughness — it’s about taking control of your health.

Life’s Essential 8: Building a stronger foundation

The AHA’s Life’s Essential 8 framework recognizes sleep as a core component of heart health, alongside health behaviors such as eating better, being more active and avoiding tobacco. By adding sleep to this list, the AHA emphasizes that healthy sleep is an essential part of maintaining heart health.

This inclusion reflects the growing understanding that poor sleep contributes to the same health risks as other factors like high cholesterol or blood pressure. Prioritizing quality sleep is essential for long-term heart health.

Take control of your health

The partnership between the AHA and NFL Alumni Association serves as a reminder that improving heart health includes improving sleep. It’s never too late to make changes that can benefit both your heart and your overall health.

If you’re experiencing an ongoing sleep problem, use the AASM’s sleep center directory to get help from the sleep team at an accredited sleep center.

Medical review by Ahmed Saleh, MD

Related:

• Aaron Taylor warns young football players to be aware of sleep apnea risk
• Unlock the secrets to a healthier heart through better sleep
• Untreated sleep apnea puts heart health at risk
• How sleep disorders affect men’s health

Authored by: Kate Robards

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Why sleep matters for kids

Sleep is essential for children’s physical and mental health. It helps their bodies grow, strengthens the immune system and supports brain development. When children sleep, their brains process what they learned during the day, helping them retain information and build new skills. Sleep also supports emotional regulation, helping kids handle stress, frustration and social interactions more effectively.

Without enough sleep, kids may face serious challenges. According to an AASM survey, parents reported that poor sleep affected their children’s mood (58%), attitude (49%), behavior (49%), physical energy (44%) and academic performance (30%). Over time, sleep deprivation can contribute to obesity, depression and an increased risk of chronic diseases.

Sleep also offers a natural way to support children’s health without relying on medication. It improves focus, emotional stability and physical energy — all key factors for success in school and life.

“Making sleep health a priority is one of the simplest and most effective ways to support the next generation,” said Dr. Eric Olson, president of the AASM. “Sleep can impact every aspect of a child’s well-being — physical growth, mental resilience, learning ability and even long-term disease prevention. By investing in sleep research and education, we can make a meaningful, lasting impact on our nation’s children.”

Make America Healthy Again Commission

Chaired by Health and Human Services Secretary Robert F. Kennedy Jr., the Make America Healthy Again Commission is developing recommendations for President Trump on how to address chronic diseases in children.

The Healthy People 2030 initiative of the Office of Disease Prevention and Health Promotion is one example of how the federal government is already emphasizing the importance of sleep for health, productivity, well-being, quality of life and safety. Its sleep health objectives include increasing the number of children and teens who get enough sleep.

The need for more sleep research

Advancing research in sleep science is vital for understanding and preventing health conditions that begin in childhood and continue into adulthood. Scientific studies link poor sleep in children to long-term health issues, including chronic diseases, weakened immune function and mental health challenges. More funding for pediatric sleep research is essential to allow scientists to develop evidence-based strategies to improve kids’ sleep habits and prevent these problems before they start.

The National Center on Sleep Disorders Research, established by Congress in 1993, plays a vital role in advancing sleep science. Increased funding for the center would drive new studies on how sleep affects children’s growth, learning and well-being. This research could lead to better strategies and interventions to improve children’s sleep health at a national level.

“By supporting policies that promote healthy sleep and funding research to better understand its impact, we can take meaningful steps toward preventing disease and improving the well-being of everyone — especially our children,” said Dr. Olson. “Prioritizing sleep health is a vital part of the broader mission to ‘Make America Healthy Again’ by addressing one of the most fundamental yet often overlooked aspects of our health.”

Learn more about the importance of sleep at sleepisgoodmedicine.com.

If you have an ongoing sleep problem, use the AASM’s sleep center directory to get help from the sleep team at an accredited sleep center.

Related:

• Healthy sleep is vital to children’s well-being
• Late bedtimes linked with childhood obesity
• Sleep disorders in children
• Resolution 1103 supports the designation of National Student Sleep Health Week

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Participating in this registry and providing information related to a variety of topics, such as work, transport, and parenthood, will allow researchers to have easy access to useful data on individuals with narcolepsy in order to develop better studies more quickly as well as more easily find participants for these studies. PWN4PWN can also use this information to better understand narcolepsy, direct research initiatives, and inform patient support needs.

To learn more information about the registry and CoRDS, visit: https://www.pwn4pwn.org/narcolepsy-register/

PWN4PWN also has a private Facebook group where people can talk about experiences with narcolepsy and idiopathic hypersomnia and receive support. For more information on PWN4PWN, visit: https://www.pwn4pwn.org/

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What is the Sleep Helpline?

The Sleep Helpline is a professionally staffed helpline providing free, personalized, confidential support and resources for people facing sleep issues and sleep disorders.

It is run by Project Sleep, a 501(c)(3) nonprofit organization dedicated to raising awareness about sleep health, sleep equity and sleep disorders.

The helpline is funded by donors and sponsors including Jazz Pharmaceuticals and Harmony Biosciences.

Who the Sleep Helpline aims to support

Designed to assist a diverse range of people, the Sleep Helpline supports those uncertain about having a sleep-related condition, individuals already diagnosed with a sleep disorder, loved ones and caregivers seeking support, health care providers looking for resources, educators, social workers, and anyone seeking information about sleep disorders.

How the Sleep Helpline can assist you

The Sleep Helpline aims to be a comprehensive resource for anyone dealing with sleep-related challenges. Here’s how they can assist:

• Help you communicate with your health care team.
• Provide information about sleep disorder symptoms, diagnosis and treatment options.
• Offer guidance from diagnosis to treatment and assist with navigating daily living.
• Provide free educational materials about sleep disorders.
• Connect you to resources, patient organizations and assistance programs.

How to reach out

When you contact the Sleep Helpline, you’ll connect with a resource specialist who will listen, provide information and resources about sleep disorders, and connect you to certified sleep centers and patient support organizations. There are several ways to get in touch:

1. Phone: Call 1-800-819-2043 to speak with a resource specialist.
2. Email: Send your queries or concerns to helpline@project-sleep.com.
3. Online Form: Submit a form on the website at project-sleep.com/helpline/.

Related

• Find a patient support organization
• Find a health care center
• Patient advocacy

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