Jun 13 2019
Wake Up Narcolepsy Leadership Update
h in Blogs
Wake Up Narcolepsy (WUN), a nonprofit organization working to improve the lives of people living with narcolepsy, today announce the appointment of five new members of it’s Board of Directors, effective immediately. WUN also has appointed Laura Fabrizio as Chairman of the Board of Directors. In additon, Dr. Kiran Maski has been appointed to the WUN Medical Advisory Board.
NEW CHAIR APPOINTED TO LEAD WUN
Laura Fabrizio of East Grand Rapids, MI, was appointed as Chair of the Board of Directors on April 1, 2016. Laura brings over 15 years of marketing, fundraising, and volunteer experience to Wake Up Narcolepsy. In her current role for Troy Abstract and Title, she leads expansion of the organization to the West Michigan market. In 2009, Laura and Patrick’s youngest son developed narcolepsy and cataplexy. Over the last few years they, along with their two daughters, have worked to raise awareness in the educational setting and community. She holds leadership and volunteer positions within the local school district and West Michigan area. Laura was appointed as the Chairman of the Board April 1, 2016.
NEW MEMBERS TO WUN BOARD OF DIRECTORS
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 and 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. Anne was appointed to the WUN Board of Directors effective August 3, 2015.
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 world-wide for 22 years. Nicole is her own agent, and has negotiated all of her sponsorship arrangements. At 25 years of age, 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”, her campaign which raises awareness and funds for Narcolepsy while she competes on the LPGA and other golf tours. Nicole was appointed to the WUN Board of Directors effective January 2, 2016.
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. Kevin joined the Board of Directors effective January 20, 2016.
Jeff Nouhan of Boca Raton, FL, is a Principal at Sandstone Consulting Group and was previously the Chief Operating Officer & General Counsel for Destination Rewards, a Florida-based company that Jeff helped grow to more than $100 million in 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. He learned about the organization through a close family friend whose son was diagnosed with narcolepsy. Jeff was appointed to the WUN Board of Directors effective February 5, 2016.
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. Suzanne was appointed to the WUN Board of Directors effective February 16, 2016.
NEW MEMBER APPOINTED TO WUN’S MEDICAL ADVISORY BOARD
Kiran Maski, MD 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.
“These changes and additions to WUN’s leadership together with current Board members, will add strength at a time of deepening growth for WUN,” said Monica Gow, Executive Director and Co-founder. “Naturally, growth brings new governance challenges and opportunities. I look forward to working with this exemplary assemblage as we plan and implement the next phase in WUN’s efforts to speed narcolepsy diagnosis through greater awareness and fund research for a cure.”
Wake Up Narcolepsy is a nonprofit organization working to speed narcolepsy diagnosis by spreading awareness and fund medical research for a cure. Narcolepsy is a devastating lifelong, incurable sleep disease affecting 200,000 Americans and millions worldwide.