We accomplish our Mission by:
Upon recognizing the great need to raise awareness and research funds for Narcolepsy, Kevin Cosgrove teamed up with Monica and David Gow to establish Wake Up Narcolepsy, Inc. in 2008. Wake Up Narcolepsy has quickly become a national leader for Narcolepsy research and awareness, as it is dedicated to funding research into the causes, prevention, treatments and a cure for Narcolepsy while increasing awareness amongst the public. Every year, Wake Up Narcolepsy hosts various awareness-driven events and makes substantial contributions to cutting-edge Narcolepsy research.
People with Narcolepsy have been living in the shadows. It’s time to step into the light.
Co-Founder and Board Chair
Monica holds a Master in Public Administration (MPA) from Clark University and resides in Worcester, MA with her husband and three children. In 2008, when her oldest son was diagnosed with narcolepsy & cataplexy, 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.
David Gow is a partner in Ernst & Young’s New England Private Capital Group. Dave has more than 25 years of experience working closely with private capital and venture capital firms. He has extensive experience in areas such as investment fund accounting and reporting, asset valuation, partnership accounting and evaluation of internal controls. David and his wife, Monica, became motivated to bring further awareness and education to the narcolepsy community when their son was diagnosed in 2008. David is a member of the Board of Directors of Big Sisters Association of Greater Boston.
Anne Samarawickrama lives in Woodinville, WA with her husband and two boys. Her oldest son was diagnosed with narcolepsy five years ago. Anne and her husband are very motivated to raise funds to help find a cure for narcolepsy as well as fund research for advancement in patient treatment. She has been fundraising for research at Stanford Center for Narcolepsy for the past five years. She has worked as a volunteer to bring awareness about this condition to her community. She has been a homemaker for the past 5 years and was previously employed at two local CPA firms in Seattle with experience in accounting and tax preparation.
Nicole Jeray, Chicago, IL is an LPGA tour player and long-time advocate for narcolepsy awareness. Since graduating from Northern Illinois University, she has played professional golf worldwide for 22 years. Nicole is her own agent and has negotiated all of her sponsorship arrangements. At 25 years old, Nicole was diagnosed with narcolepsy. After suffering for several years, she realized how misunderstood narcolepsy was and became determined to educate the world. Five years ago Nicole started “Swinging for Sleep”, a campaign which raises awareness and funds for narcolepsy while she competes on the LPGA and other golf tours.
Kevin Guckian, of Chatham, NJ is a Partner in Ernst & Young’s National Professional Practice Group based in New York. Kevin has over 30 years experience providing assurance and advisory services to companies in the financial services industry. Prior to his current role, Kevin served as an audit partner in Ernst & Young’s Netherlands, Philadelphia, Bermuda and New York Financial Services Offices. Kevin and his wife, Mary Beth, have a teenage daughter that was diagnosed with narcolepsy with cataplexy at age eleven. Kevin and Mary Beth have been involved with Wake Up Narcolepsy to raise awareness about narcolepsy and to raise funds for research. Kevin is a member of the Board of Trustees of Saint Peter’s University.
Tammy Smith of New Canaan, CT has spent most of her career in the field of Home Health Care. She has worked as a primary care nurse, in administration and quality improvement. She has also served as the Educational Program Director for the non-profit Multiple Myeloma Research Foundation. Tammy and her husband, Scott have a son, Ryan and a daughter, Lauren. Lauren, was diagnosed with narcolepsy and cataplexy in 2014 at the age of twenty-one. Tammy’s goal is to better the lives of those with narcolepsy thru increased awareness and education for PWN, families and the community.
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 type 1 narcolepsy with cataplexy in January of 2018 at the age of 22 after 6 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.
Board Member Emeritus
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.
Claire Crisp, originally from England, trained as a physical therapist at St Thomas’s Hospital, London, and practiced as a clinician for a decade in the British National Health Service and in private healthcare. In 2010 her third child, Mathilda, was diagnosed as the youngest person with narcolepsy in the world. The search for adequate treatment took Claire and her family to numerous specialists in the UK, and eventually to California, where Mathilda received life-changing care at Stanford University. Claire is the author of Waking Mathilda: A Memoir Of Childhood Narcolepsy, which won the International Reader’s Favorite 2017 Silver Medal and has also been optioned for a motion picture. Her passion for helping those who suffer with narcolepsy lead better lives is evident in her writing and presentations at conferences where she speaks on parenting a child with narcolepsy, suffering, advocacy and the writing journey. Claire has been featured in both the UK and the USA news, in press, podcast, and on radio. She Lives in Los Angeles with her husband and three children.
For more information about Claire see: www.claireccrisp.com
Buy Waking Mathilda: A Memoir Of Childhood Narcolepsy on Amazon.com.
Director of Development
Lindsay Jesteadt, lives in Palm Beach Gardens, Florida with her husband and two children. Her youngest child, Noah started displaying symptoms of narcolepsy with cataplexy at the age of four. With a PhD in Education, she has spent her career as a special education teacher, special programs coordinator, and assistant principal at the K-12 level. In addition to the K-12 sector, she has also spent the last four years in higher education teaching graduate level courses in special education, school law, and educational leadership. Lindsay is passionate about raising awareness for narcolepsy and perhaps, one day, being able to tell her son there is a cure.
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.
Dr. Jason Ong is an Associate Professor in the Department of Neurology and the Center for Circadian and Sleep Medicine at the Northwestern University Feinberg School of Medicine. He received his PhD from Virginia Commonwealth University and completed a fellowship in Behavioral Sleep Medicine at Stanford University. Dr. Ong’s primary research interest is focused in non-pharmacological treatments for sleep disorders, including cognitive-behavioral therapy (CBT) and mindfulness meditation. Additional research interests include the impact of sleep disturbance on chronic health conditions such as migraine headaches. He also has a clinical practice where he delivers CBT for insomnia and provides psychosocial support for patients with narcolepsy. Dr. Ong is the Immediate Past President of the Society of Behavioral Sleep Medicine.
David Ingram, MD, is pediatric sleep physician at Children’s Mercy Hospital. He completed his pediatric training at the University of Wisconsin-Madison and sleep medicine fellowship at the University of Colorado and National Jewish Health. In addition to caring for children with sleep problems in clinic, he is founding editor of the ATS Pediatric Sleep Case Series and is adjunct faculty in the department of psychology where he teaches a college Sleep & Dreams course. His clinical and research interests are focused on sleep in children with neurodevelopmental disabilities and narcolepsy in children.
Julea Steiner, of Chapel Hill, NC, is a clinical assistant professor in the Gillings School of Global Public Health at the University of North Carolina at Chapel Hill. She brings over 15 years of experience in health communications, marketing and public health advocacy to Wake Up Narcolepsy. After suffering with sleepiness and cataplexy for more than 25 years, Julea was finally diagnosed with narcolepsy at age 35. She is passionate about raising awareness about narcolepsy and encourages others to explore their symptoms and break through the cultural stereotypes of the disorder. She currently serves on the advisory board for the National Institutes of Health Center on Sleep Disorders Research.
Ruth Marion, a Certified Meeting Professional, spent the last twenty three years in hospitality, managing and planning worldwide conferences for multiple trade associations. In 2016, Ruth was approached by The Sleep Forum, a news site all about sleep, to join their team. Ruth, a business development professional with a BBA in Marketing from Pace University, jumped at the opportunity.
Ruth’s passion for the topic of sleep was inspired by her daughter who was diagnosed with narcolepsy nine years ago. Ruth has been educating herself on the topic of sleep for many years and has learned even more from living with someone with a sleep disorder like narcolepsy. Having a secret talent (and enjoyment with) writing since a young age, moving into Editor position at The Sleep Forum was a natural for Ruth. Ruth and her team of five people, located throughout the USA, have grown The Sleep Forum into a news site that is noticed on apple news, google news and social media. Ruth is excited to report via a weekend newsletter or podcasting to The Sleep Forum audience of over 80,000 worldwide. Ruth is an enthusiastic supporter of Wake Up Narcolepsy and the work they do raising funds for research and awareness for the disease.
Bio coming soon!
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 1980’s and 90’s.
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.
We raised $25,000 for narcolepsy research!
We celebrated the first year of Wake Up Narcolepsy.
Team WUN- Monica Gow, Julie Flygare, Crystal Ellis, and Becky Polenski trained and raised $30,000 for narcolepsy research.
We raised $10,000 for narcolepsy research!
Team WUN- Monica Gow, Kim Grady and John Leahy trained and raised $30,000 for narcolepsy research!
We raised $25,000 for narcolepsy research!
We raised $40,000 for narcolepsy research!
Team WUN- Nancy Chamberlin, Tabitha Crawford, Monica Gow, John Leahy, Kim and Ken MacAskill trained and raised over $60,000 for narcolepsy research!
Team WUN- David Gow, Jared Chrudimsky, Shelby Harris, Jacqueline Sager, Stuart Smith, Scott Graham, Nancy Chamberlin, Brian Nist and Dan Rech trained and raised over $56,000 for narcolepsy research!
Team WUN- David Gow, Ernie Freedman, Cherie Johnson, Katie Goode, Justin Ferguson, Stephen Smith, Lalita Bumpen and Alysia Steinmann trained and raised almost $85,000 for narcolepsy research!
Our first-ever awareness event in NYC
Forrest Wise organized a 70k relay to raise awareness about narcolepsy to celebrate his 70th birthday.
Hieb Family raised funds for WUN and awareness about narcolepsy in their local community.
Team WUN- David Gow, Mia Filippini, Suzanne Rispoli, Lynn Stanfield, Justin Ferguson, and Lauren Johnson trained and raised over $80,000 for narcolepsy research!
This special event raised $60,000 for narcolepsy research into the causes, prevention, treatments and a cure for narcolepsy and increasing awareness amongst the public, educators and the medical community.
Team WUN- Monica Gow, Mia Filippini, Nick Starr, Lauren Johnson, Rebecca Polenski, and Patrick Bown trained and raised over $76,000 for narcolepsy research!
The event, Wake Up Now Detroit, served to educate the Detroit area about narcolepsy, and the efforts of Wake Up Narcolepsy to increase awareness about this disease, and raise money for narcolepsy research. The event raised close to $21,000. These funds were donated directly to our narcolepsy awareness campaigns and education programs to benefit patients living with narcolepsy and their families.
Team WUN- Claire Carlson, Jenna Brady, Diane Sweet, Mark Wright, Rachel Levy, and Glen Burrow trained and raised over $54,000 for narcolepsy research!
Team WUN- Amanda Burns, Michael Schiavo, Fernando Leos, Tanner Smith, Mare Giacalone and Zhang Zhang trained and raised over $56,000 for narcolepsy research!
Team WUN- Amanda Burns, Michael Schiavo, Fernando Leos, Tanner Smith, Mare Giacalone and Zhang Zhang trained and raised over $56,000 for narcolepsy research!