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How We Accomplish Our Mission

– Providing funding to accelerate a cure for Narcolepsy
– Increasing awareness of Narcolepsy
– Decreasing time-lapse from symptom onset to proper diagnosis
– Providing supportive resources for people with Narcolepsy and their families

Our Story

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.

Kevin Cosgrove, Co-founder of WUN

Board of Directors

Mary Beth Guckian Headshot

Mary Beth
Guckian

Board Chair

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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.

Lynn Grisco

Lynn
Grisco

Vice Chair

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Lynn Grisco is an accomplished biopharmaceutical commercial executive with a diversified career that spans various industries and organizations, including global life sciences, cosmeceuticals, specialty pharmacy and business consulting. Her expertise encompasses oncology, virology, neurology/CNS and other rare disease conditions. Presently, she holds the position of chief of staff to the EVP, COO, and head of commercial at Acadia Pharmaceuticals. In this role, Lynn is at the forefront of leading cross-functional teams, shaping & refining the company’s strategies and executing operational plans.

Prior to her current role, Lynn excelled in the field of pharmaceutical marketing, where she led the development of the launch strategy and marketing plans for a novel, rare CNS brand for the treatment of Narcolepsy. She developed disruptive strategies and campaigns focused on transforming the treatment landscape for people living with Narcolepsy.

Lynn’s journey took a personal turn when her 16-year-old daughter began displaying excessive daytime sleepiness (EDS). Leveraging her professional background in the pharmaceutical industry, she recognized the symptoms as Narcolepsy, enabling her to efficiently coordinate care with top-tier sleep specialists, secure a prompt diagnosis and establish a tailored treatment plan, far surpassing the typical timeline.

Lynn’s connection with Wake Up Narcolepsy (WUN) predates her daughter’s diagnosis, stemming from her prior professional engagement. However, after her daughter’s diagnosis in October 2022, Lynn wholeheartedly embraced WUN’s mission. In March 2023, she hosted the “Sudbury SleepZzz” event and campaign, passionately dedicated to raising both awareness and essential funds to support Wake Up Narcolepsy (WUN). Currently serving as the vice chair of the WUN Board of Directors and chair of the WUN Shadows to Light Gala, scheduled for Friday, September 20th, 2024, in New York City, Lynn is deeply committed to championing the cause of this widely misunderstood sleep disorder.

Lynn lives in Sudbury, Massachusetts, with her husband, Todd. In addition to their daughter, Lynn and Todd also have a son who is currently pursuing his education at Penn State University.

Kevin Guckian Headshot

Kevin
Guckian

Treasurer

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Kevin Guckian, of Chatham, New Jersey, is a retired Ernst & Young partner. Kevin spent close to 40 years with Ernst & Young, most recently as a partner in the firm’s National Professional Practice Group based in New York. Prior to that 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 also a member of the board of directors of several other not-for-profit entities.

Kimberly Cassidy Headshot

Kimberly
Cassidy

Clerk

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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.

David Gow Headshot

David
Gow

Co-founder

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David Gow is the Chief Financial Officer at Dynasty Equity. Prior to this role, he was a Financial Service Office Partner at Ernst & Young, a multinational professional services firm, spending more than 30 years at the firm. David focused on serving private equity and venture capital clients, serving its most complex diversified asset managers globally. 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 has experience serving on the board of directors of other nonprofit organizations.

Kelsey Biddle Headshot

Kelsey
Biddle

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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.

nicole

Nicole
Jeray

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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.

Gregg Levethan Headshot

Gregg
Levethan

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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.

Anne Samarawickrama Headshot

Anne
Samarawickrama

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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.

Prasanna Samarawickrama Headshot

Prasanna
Samarawickrama

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Prasanna leads a global organization in the security division at Microsoft. His organization advises and enables fortune 500 and large strategic enterprises, governmental organizations and educational institutes to adopt security technologies developed at Microsoft. His organization’s mission also includes advising product engineering team on customer needs and requirements to shape security/identity products. Prasanna has built a career in the IT sector at Microsoft over the past 31+ years. He has worked on and led efforts across multiple product lines including developer tools, Microsoft Office, Healthcare, Windows and Business Solutions prior to his current role in the security division at Microsoft. He hails from Sri Lanka. He has traveled in over 50 countries and has lived in China and Sri Lanka. He holds degrees in physics and computer science from Southern Oregon University. He lives with his wife, Anne, in the Seattle area. His two sons, Tyler and Kyle, live and attend universities in Washington DC, and Los Angeles, respectively.

gordon

Gordon
Gow

Board Member Emeritus

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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.

Our Staff

Monica Gow Headshot

Monica
Gow

Co-founder & Executive Director

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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.

Tammy B&W Headshot 2024

Tammy
Anderson

Assistant Director

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Tammy Anderson has spent most of her adult life helping build organizations that strengthen individuals and families in their efforts to reach their full potential. Her passion for understanding and seeking optimal outcomes in human development, especially within the context of family life and relationships, began at an early age, but gained focus during her studies and graduation from Brigham Young University, where she earned a degree in marriage, family and human development, with licensure as a Family Life Educator.

When her daughter was diagnosed with Narcolepsy at age 10, Tammy and her husband, a director of product management for a nonprofit organization, set out to find answers, treatments, therapies and ways that their daughter could live the fullest life possible.

Prior to joining Wake Up Narcolepsy, Tammy worked as a development director at a nonprofit and as a student advocate in public, private and home education settings, building upon her belief that every child deserves an education and opportunities that fit their individual needs and where they are most likely to succeed.

Through working with Wake Up Narcolepsy, Tammy hopes to empower other individuals and families to do the same.

Living in the foothills of Northern Utah, Tammy and her family enjoy hiking and exploring in the mountains near their home. Her family is her greatest work and accomplishment.

Deborah Pollock Headshot

Deborah
Pollock

Director of Philanthropy

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Deborah (Deb) Pollock has nearly 30 years of experience in nonprofit development, which includes the rare disease space. Deb has a passion for being a part of an organization working to find better treatments and cures for rare diseases and is excited to be a part of Wake Up Narcolepsy. Deb’s previous experiences include The National MS Society, March of Dimes, American Diabetes Association and NephCure Kidney International. Deb has worked in fundraising and development on a national level and has worked with patients, patient families and volunteers throughout her career.

Deb grew up in New Jersey, attended Alvernia University in Pennsylvania and moved two years ago with her husband Tim to Palm Bay, Florida, from Allentown, Pennsylvania. Although she now resides in Florida, she is still an avid Eagles, Phillies and Flyers fan. She enjoys spending time with her children and grandchildren who all live throughout the country.

Cara Weaver Headshot

Cara
Weaver

Marketing & Communications Specialist

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Cara Weaver has bachelor’s degrees in creative writing and English: publishing & editing, with a minor in women & gender studies, from Susquehanna University. She has 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. 

Shortly after her own Narcolepsy Type 2 diagnosis in 2018, during her junior year of high school, Cara became familiar with Wake Up Narcolepsy (WUN). After struggling for multiple years with misdiagnosis and a lack of understanding, she became dedicated to raising awareness for Narcolepsy and other sleep disorders. You can see Cara talk about her journey with Narcolepsy on our YouTube channel or read about the familial aspect of Narcolepsy with Cara and her mom on WUN’s blog.

Using her background in social media marketing, Cara looks forward to helping Wake Up Narcolepsy grow its presence online, including her launch of their new Tik Tok account. 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. 

Cara lives in Portland, Maine, with her rescue cat, Felix, and her partner. She loves visiting her hometown in Upstate New York to spend time with her mom, sister and three dogs, Lincoln, Stanley and Winston.

Barbara Gignac Headshot

Barbara
Gignac

Operations Administrator 

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Barbara Gignac holds a bachelor of science in finance from Boston College and lives with her husband in Medway, Massachusetts. She started her career as a contracts negotiator at a Global 500 aerospace firm.  After raising her two daughters, she switched careers to become an early childhood education teacher. Barbara enjoyed teaching and being a positive influence on her students and received back so much joy in return.

Giving back to her community has always been an important facet of Barbara’s life. She volunteers to make meals for families in the community that are facing difficult challenges. She was also an adult mentor for high school students at her church as well as PTO president. By working at Wake Up Narcolepsy, Barbara’s desire is to help support the WUN community.

Barbara is a lifelong resident of Massachusetts and a passionate fan of the Boston sports teams. She’s happiest when her girls are home visiting and they are all hanging out with their dog, Sadie. Barbara enjoys golfing and traveling anywhere with her family.

Medical Advisory Board

emmanuel

Emmanuel
Mignot MD, PhD

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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 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 Headshot

Thomas E.
Scammell, MD

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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

Indra
Narang, MD

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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.

Kiran Maski, MD

Kiran
Maski, MD

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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.

David Ingram Headshot

David
Ingram, MD

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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.

Shelby Harris Headshot

Shelby
Harris, PsyD, DBSM

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Shelby Harris, PsyD, DBSM is a clinical psychologist and sleep specialist in private practice in NY. She is board certified in Behavioral Sleep Medicine and treats a wide variety of sleep, anxiety and depression issues using evidence-based, non-medication treatments. Her self-help book, The Women’s Guide to Overcoming Insomnia: Get a Good Night’s Sleep Without Relying on Medication was published in 2019. Dr. Harris holds a dual academic appointment as Clinical Associate Professor at the Albert Einstein College of Medicine in both Neurology and Psychiatry. Before going into private practice, she was the longstanding director of the Behavioral Sleep Medicine Program at the Sleep-Wake Disorders Center at Montefiore Medical Center in NYC, NY.  Dr. Harris has been an invited columnist for the New York Times “Consults Blog,” and is frequently quoted in the media, including the New Yorker and Washington Post. She has appeared on the Today Show, Good Morning America and CBS Mornings. Dr. Harris can also be found on Instagram at @SleepDocShelby where she provides evidence-based information about sleep wellness and sleep disorders.

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