Monica Gow is a Co-Founder and Board Chair. In 2008, when her son Thomas was diagnosed with narcolepsy, Monica and her husband, David, co-founded WUN. Monica served as Executive Director of Wake Up Narcolepsy (WUN) for eight years before moving to the WUN Board of Directors in October 2016. She has supported the growth of WUN from a local 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. She has two other children, Caroline and Joe, who have been involved with the organization since inception. Prior to serving the narcolepsy community, Monica gained many years of work experience in the insurance field in companies such as The Paul Revere Insurance Companies and Tufts Associated Health Plan, and is a certified elementary teacher. Monica’s passion will always be to improve the lives of people living with narcolepsy.
David Gow, Treasurer, Co-Founder, of Worcester, MA, 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.
Jeff Nouhan, of Boca Raton, FL, is a Principal at Sandstone Consulting Group, a management consulting firm providing advisory services to early-stage, growth-stage and restructuring businesses. Jeff was previously the Chief Operating Officer for Destination Rewards, a Florida-based company that Jeff helped grow to more than $100 million in gross revenues and sell to a publicly-traded financial services institution. Jeff previously served as Vice President & Assistant General Counsel at Waltham, MA- based ModusLink Global Solutions. He brings more than 20 years of legal and operational expertise to Wake Up Narcolepsy, which he learned about through close family friends whose son was diagnosed with narcolepsy and cataplexy. Jeff hopes to help WUN raise awareness and diagnosis of narcolepsy and related disorders.
Suzanne Trenta-Rispoli, CPA lives in Robbinsville, NJ with her four children ages 8 to 15. As a Client Executive in her current position with VMware and former COO of her own company, Theresa Kathryn Inc., she is an expert in Financial Analysis, Business Development, Leadership and Operations. Having worked for global organizations like AT&T and PriceWaterhouseCoopers, Suzanne brings a vast array of her experience to Wake Up Narcolepsy. Since her 13 year old son was diagnosed with Narcolepsy at the age of 9, she has been a tireless fundraiser and advocate for narcolepsy awareness. She ran the Boston marathon and was able to raise thousands of dollars through the support of family, friends, coaches and businesses. She is extremely motivated to continuing this work and dedicated to one day helping to find a cure. Through her efforts as a Board member, in cooperation and affiliation with others, she is confident a cure is on the horizon.
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.
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.
Gordon Gow, Board Member Emeritus, 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, Executive Director, originally from England, Claire 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
To buy Waking Mathilda: A Memoir Of Childhood Narcolepsy on Amazon.com click here.
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.
Medical Advisory Board
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.
Dr. Indra Narang 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. Jason Coles, MD, is a Sleep Medicine specialist at Spectrum Health Medical Group and Helen DeVos Children’s Hospital in Grand Rapids, Michigan. His busy clinical practice is equally divided between adult and pediatric patients. He is board certified in Sleep Medicine, Internal Medicine and Psychiatry. Dr. Coles is a graduate of Michigan State University College of Human Medicine, and completed residency and fellowship training at Dartmouth Hitchcock Medical Center in New Hampshire. He holds the position of Clinical Assistant Professor at Michigan State University College of Human Medicine.
Dr. Coles specializes in all sleep disorders throughout life, but has particular clinical interest in identifying and treating sleep disorders in childhood to maximize long term academic success, psychological well-being, and physical health.
Kiran Maski, MD
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.
Wake Up Narcolepsy proudly partners with the organizations and individuals shown below. Together, we share a mission to speed narcolepsy diagnosis through greater awareness, and support medical research to find improved therapies and a cure. To learn more about these partners, please visit their websites linked below.