Mary Beth Guckian graduated from Providence College with a bachelor’s degree in accounting. Prior to having children, Mary Beth worked as a financial analyst in the not-for-profit sector, including New York City Housing Development Corporation and Children’s Television Workshop (now Sesame Workshop).

Mary Beth and her husband, Kevin, both natives of New Jersey, have two grown children. As a family, they spent a number of years relocating domestically and internationally for Kevin’s job. They now live in Chatham, New Jersey.

In the spring of 2010, their daughter, Elizabeth, then eleven years old, started experiencing excessive daytime sleepiness (EDS) and cataplexy. Within months, she was diagnosed with Narcolepsy Type 1, and so began the journey of learning to live and cope with this condition.

It was upon searching for more information online about Narcolepsy that Mary Beth became aware of Wake Up Narcolepsy. She and her husband became involved with the organization and have worked to raise funds for research.

In May 2014, Mary Beth chaired the “New York, New York” Wake Up Narcolepsy event, featuring guest speaker and PWN Ginger Zee of Good Morning America. The following year, Mary Beth partnered with Vineyard Vines to host an in-store fundraising event from which a portion of the sale’s proceeds was donated to Wake Up Narcolepsy.

Through her work with Wake Up Narcolepsy, Mary Beth hopes to promote awareness of this deeply misunderstood sleep disorder and to help fund research for a cure.

Nicole Jeray of Chicago, Illinois, is an LPGA tour Veteran and long-time advocate for Narcolepsy awareness. Since graduating from Northern Illinois University, she has played professional golf worldwide for almost 30 years. Nicole was diagnosed with Narcolepsy at age 25 during her 2nd year on the LPGA tour. After suffering for several years, she realized how misunderstood Narcolepsy was and became determined to educate the world. Nicole started “Swinging for Sleep,” a campaign that raises awareness and funds for Narcolepsy while she competed on the LPGA and other golf tours. Nicole now teaches golf full-time at Mistwood GC, coaches high school girls’ golf at her alma mater, Nazareth Academy, and still plays professional tournaments on the Legends of the LPGA.

Kelsey Biddle graduated from Dartmouth College in 2017 with a bachelor’s degree in neuroscience. After college, she began working as a clinical research coordinator in the Department of Psychiatry at Brigham & Women’s and Massachusetts General Hospitals. Here, Kelsey performs cognitive assessments for the Harvard Aging Brain Study, and investigates the neuropsychiatric symptoms of Alzheimer’s Disease with Dr. Nancy Donovan, a geriatric psychiatrist. Kelsey was diagnosed with Narcolepsy Type 1 (Narcolepsy with Cataplexy) in January of 2018 at the age of 22 after six weeks of symptoms.  As a neuroscience major and daughter of an immunotherapy-focused physician-scientist, she was in the “right place at the right time” to be the first human subject in a novel immunotherapy intervention trial for new onset Narcolepsy.  Kelsey decided to share her personal story to raise awareness about this misunderstood autoimmune neurologic disorder, and prove to herself and others that one can overcome adversity and setbacks and adapt in a positive way. She aspires to a career in neuropsychiatry & healthcare and hopes to contribute to the advance of knowledge and innovative treatments in the field of neuropsychiatry. As a board member, she hopes to foster research and research funding on Narcolepsy to help develop better treatments and to use her personal experience and background in neuroscience to help other PWNs and their loved ones develop their own coping skills to help get them through the tough times and foster a life of purpose and fulfillment.

Anne Samarawickrama lives in Washington State and has been a board member at WUN since 2015. Her son was diagnosed with Narcolepsy over 12 years ago. Her family’s struggles in getting an accurate diagnosis, finding expert sleep specialists and providing effective medications for their son have motivated them to be part of WUN to help others on the same journey. Being alone in the struggle is very difficult and the need to lessen this burden is very important. Being part of a team to promote awareness and education about Narcolepsy is vital to the community. In addition, Anne and her husband, Prasanna, have organized an annual fundraiser in Seattle to raise research funds since 2011. They are dedicated to helping researchers find new therapies, improve current medications and ultimately find a cure for Narcolepsy.

Gregg Levethan holds an MBA from New York University and resides in Pound Ridge, New York, with his wife and twin daughters. He spent his career as CEO of Syd Levethan Shoes, one of the largest companies importing men’s footwear from Italy. In addition, he was the creative director responsible for all design and manufacturing and collaborated with many well-known designers in the 1980s and 90s.

One of his twin daughters developed Narcolepsy during her junior year of college. After attending a WUN-sponsored event in 2018, Gregg took an active interest in the state of new Narcolepsy treatments and medications, which have been developing at a rapid pace in the past several years. Gregg looks forward to assisting WUN in fulfilling its mission of raising awareness and fostering research to develop new treatments for this disease.

Kimberly Cassidy, a native Floridian, was born, raised, and resides in Lakeland, Florida. Kimberly graduated from the University of Tennessee and went into human resources. She was the HR Director for Quest Diagnostics Laboratories prior to leaving to raise her family. Kimberly is the proud mother of a sophomore and senior in high school. She and her husband, Curt, a double board-certified general and forensic psychiatrist, have been married for twenty years. Their son Jackson was diagnosed with Narcolepsy with Cataplexy (NT1) at the age of ten. Kimberly has advocated tirelessly for Jackson, and he is succeeding despite the overwhelming obstacles NT1 presents. Jackson will be attending college next year and hopes to become a professor of history or a physician.

Jackson’s journey instilled a desire in Kimberly to share his story and become a beacon of hope for others. She is passionate about improving medical schools’ curriculums to include more extensive teaching about Narcolepsy. Working alongside her husband, she plans to increase Narcolepsy awareness in their community and help make strides in finding a cure.

Lynn Grisco is an accomplished biopharmaceutical marketing executive with extensive experience in oncology, virology, neurology/CNS and other rare disease conditions. Her most recent role was in marketing for Avadel Pharmaceuticals, where she led the launch strategy and marketing plans for a new, rare CNS brand (Lumryz®) for the treatment of Narcolepsy. She developed disruptive strategies and campaigns focused on transforming the treatment landscape for people living with Narcolepsy.

It was during this time that Lynn’s 16-year-old daughter started demonstrating excessive daytime sleepiness (EDS), and Lynn’s experience at Avadel enabled her to attribute those symptoms to Narcolepsy, coordinate care by top sleep specialists, obtain a diagnosis, and identify a treatment plan more quickly than is typical.

Lynn became familiar with Wake Up Narcolepsy (WUN) through her work at Avadel and personally joined their mission after her daughter’s diagnosis in October 2022. In March 2023, she hosted the “Sudbury SleepZzz” event and campaign to raise awareness and funds to support Wake Up Narcolepsy (WUN). Through her work with Wake Up Narcolepsy, Lynn hopes to promote awareness of this misunderstood sleep disorder and help fund additional treatment options and research for a cure.

Lynn lives in Sudbury, Massachusetts, with her husband, Todd. In addition to their daughter, Lynn and Todd also have a son attending Penn State University.

Gordon Gow of Toronto has extensive experience in large corporate environments as well as with smaller and start-up enterprises at both the board and operational management levels. He has a solid background in raising capital in venture markets and in public markets with a unique understanding of the most senior levels of international, federal and provincial governments. With a track record of success in launching companies and building and coaching strong management teams, Gordon has strong administrative and “people management” skills. He is an enthusiastic and aggressive self-starter, and is highly motivated by challenge and opportunity.

Monica holds a Master in Public Administration (MPA) from Clark University and resides in Worcester, Massachusetts, with her husband and three children. In 2008, when her oldest son was diagnosed with Narcolepsy with Cataplexy (NT1), Monica and her husband, David, founded Wake Up Narcolepsy (WUN). She served as Executive Director of WUN for eight years before being appointed to the Board of Directors in October 2016, and then to the position of Board Chair in January 2017. She has supported the growth of WUN from a local grassroots nonprofit organization to a recognized national and international organization offering trusted resources for physicians, people with Narcolepsy, their families and other agencies in the sleep space. Prior to serving the Narcolepsy community, Monica gained many years of work experience in the insurance field and is a certified elementary teacher. Monica’s passion will always be to improve the lives of people living with Narcolepsy.

Cara Weaver is a current senior at Susquehanna University with a passion for combining her interests in writing and graphic design with her determination for helping others. She believes that everyone has a story and loves being a part of encouraging them to tell it. Her majors are in creative writing and English: publishing & editing, and she also has a minor in women & gender studies. 

She became familiar with Wake Up Narcolepsy shortly after her own Narcolepsy Type 2 diagnosis in 2018. After struggling with misdiagnosis and a lack of understanding, she decided to help raise awareness for Narcolepsy and other similar conditions. Sleep had always been crucial to her, but now she understood why. She was determined to assist in leading others to this same realization, through whatever means she could. 

Cara has a background in marketing and social media work and looks forward to helping Wake Up Narcolepsy grow its presence online. She believes that information about rare disorders should be common knowledge and easily accessible so that no one has to struggle alone. She hopes to create content that will help other people struggling with Narcolepsy realize they have support, even when it doesn’t feel like it. 

Although she attends school in Pennsylvania, Cara is from Baldwinsville, New York, and spends her time there with her mom, sister, and three dogs, Lincoln, Stanley, and Winston. When she isn’t home, she misses her family, the endless snow, and the bagels.

Emmanuel Mignot MD, PhD, Professor of Psychiatry and Behavioral Sciences and Director of the Center for Narcolepsy at the Stanford University School of Medicine

Dr. Mignot is internationally recognized as having discovered the cause of narcolepsy. He is also known for his discovery of a polymorphism of the “clock” gene that appears to alter individuals’ internal biorhythms, and for finding a gene variant that predisposes a person to sleep apnea. Dr. Mignot is a former student of the Ecole Normale Superieure (Ulm, Paris, France) and received his MD and PhD from Paris V and VI University in France. He practiced medicine in France for several years before serving as a visiting scholar at the Stanford Sleep Disorders Clinic and Research Center and later as a visiting assistant professor at Stanford. Dr. Mignot joined the Stanford faculty as acting assistant professor of psychiatry and behavioral sciences and was named director of the Stanford Center for Narcolepsy in 1993. He was named Professor of Psychiatry and Behavioral Sciences in 2001.

Dr. Mignot has received numerous research grants and honors, including National Sleep Foundation and National Institute of Health Research Awards, the Narcolepsy Network professional service award, the Drs. C. and F. Demuth 11th Award for Young Investigators in the Neurosciences, the W.C. Dement Academic Achievement Award in sleep disorders medicine, the CINP and ACNP awards in neuropharmacology, and the Jacobaeus prize.

He is co-author of more than 100 original scientific publications, and he serves on the editorial board of scientific journals in the field of sleep-disorders research. Dr. Mignot is an active member of several professional and governmental organizations. Visit Stanford Center for Narcolepsy.

Thomas E. Scammell, MD, Professor of Neurology, Harvard Medical School, Beth Israel Deaconess Medical Center, and Medical Director of the Center for Pediatric Sleep Disorders, Boston Children’s Hospital.

Dr. Scammell’s lab focuses on the neurobiology of sleep and the neural basis of narcolepsy. Narcolepsy is caused by an extensive and selective loss of the hypothalamic neurons that produce the orexin neuropeptides (also known as hypocretins). This cell loss generally occurs in the teens or young adulthood and results in lifelong sleepiness and cataplexy, brief episodes of muscle weakness that are similar to the paralysis that occurs during REM sleep. Much of Dr. Scammell’s current research focuses on mouse models of narcolepsy, as mice lacking orexins also experience sleepiness and frequent episodes of cataplexy. Dr. Scammell’s lab hypothesizes that orexins normally stabilize the activity of wake-promoting brain regions, but absence of orexins produces rapid transitions from wakefulness into sleep, and intrusions into wakefulness of REM sleep elements, such as cataplexy or hallucinations. Additional research focuses on how positive emotions trigger cataplexy, and the changes in human brains when narcolepsy develops.

The major goals of Dr. Scammell’s lab are to identify the neural mechanisms through which the orexin system controls sleep and wakefulness and to determine how loss of the orexin peptides results in sleepiness and cataplexy. Learn more at Dr. Thomas Scammell’s Laboratory website.

Indra Narang, MD, is the Director of Sleep Medicine at the Hospital for Sick Children, Toronto, and an Assistant Professor in Pediatrics at the University of Toronto. She undertook her fellowship training between London (UK) and Toronto, Canada. She then went on to complete her sleep training at the Children’s Hospital of Philadelphia under Dr. Carole Marcus. Dr. Narang completed her doctoral thesis at the University of London (UK).

Her current clinical and research interests are focused on obesity associated obstructive sleep apnea and cardiovascular risk, control of breathing during sleep, and narcolepsy in children.

Dr. Maski completed her pediatric neurology and sleep medicine training at Boston Children’s Hospital (BCH) and is currently runs the Sleep Neurology Clinics at BCH. She has a clinical interest in disorders of hypersomnia and sees many children and adolescents with narcolepsy in her busy clinical practice. Her research interests include understanding the physiology of narcolepsy and the relationship between hypocretin (the hormone reduced in patients with narcolepsy) and cognition and mood. In addition, Dr. Maski is a physician advocate for patients with narcolepsy and is working with Wake Up Narcolepsy, Inc. and the American Sleep Medicine Foundation, Inc. to create educational tools to help school based professionals have a better understanding about narcolepsy and optimize patients’ academic success.