Matt Flesch is Vice President, Communications and Patient Advocacy of Horizon Pharma, where he leads communications strategy and tactics for 11 medicines addressing the needs of people living with rare disorders and rheumatic diseases. Prior to joining Horizon Pharm, Matt was a Director at Lundbeck, where he led the public relations team driving strategic communications initiatives for seven central nervous system brands. At Lundbeck, Matt led the “Your Partner in Epilepsy” campaign, and collaborated with the Epilepsy Foundation on Studio E: The Epilepsy Art Therapy Program. Matt Led the growth of the program from a pilot in Chicago to more than 50 U.S. cities.
Matt is a founding member of the Chicago chapter of NephCure Kidney International, a nonprofit organization focused on a rare kidney disease called Focal Segmental Glomerulosclerosis. Matt graduated from Northpark University in 1997 where he was sports editor for school newspaper and earned three varsity letters as member of baseball team. He is an avid fan of the Chicago Cubs, White Sox, and Bulls. Matt serves as chair of the Board of Directors.
Mary is a retired IBM executive with experience in developing and managing software products. Her last position with IBM was in business re-engineering consulting for IBM clients. She has served on seven non-profit boards and created two non-profit organizations. Ms. Vernick also serves as the Corporate Secretary.
Emily Nicoli is a nurse practitioner passionate about epilepsy advocacy, population health, geriatrics, and palliative care. Emily is also a mother to a larger than life toddler who was diagnosed with infantile spasms and focal epilepsy at only 9 weeks of age. Emily shares her family’s journey through the lenses of a clinician and first time mom in hopes of bringing awareness to epilepsy and supporting other parents of medically complex and/or disabled children. She received her Master’s degree in adult-gerontology primary care at the University of Maryland School of Nursing and holds additional certification in hospice and palliative care. Emily currently serves as chief nursing officer for UnitedHealthcare Retiree Solutions who specializes in serving the retiree health care needs of employer groups for nearly 1.8M seniors nationally. Emily lives in Boynton Beach, Florida with her husband and son and in her free time enjoys days at the beach, volunteering, and reading. Ms. Nicole serves as the board treasurer.
Sandi Lam, MD, MBA
Dr. Sandi Lam is the Division Head of Neurosurgery at the Ann & Robert H. Lurie Children’s Hospital of Chicago as well as professor of Neurological Surgery at Northwestern University Feinberg School of Medicine. She was recently awarded $4 million in funding from the Patient Centered Outcomes Research Institute to understand the comparative effectiveness of palliative surgery versus additional anti-seizure medications for Lennox-Gastaut syndrome.
Cecile Dame, PhD
Dr. Dame is a senior nuclear engineer at MPR Associates in Virginia. She is a parent of a child who required hemispherotomy to stop seizures, including infantile spasms, caused by cortical dysplasia. She chairs our fundraising committee and oversee our development strategies.
Nicole Murray is the former Corporate Philanthropy Officer at the Epilepsy Foundation and is also the parent of a child who required hemispherotomy to stop seizures, including infantile spasms, caused by cortical dysplasia. Nicole was formerly the Director of Development at The Brain Recovery Project until early 2020. Prior to joining The Brain Recovery Project, Nicole was the National Director of Corporate Partnerships at Citizen Schools. Nicole has a deep knowledge of our programs and impact and chairs our Program Committee.
Dr. Gary Mathern, MD Board member emeritus (non-voting)
Dr. Gary Mathern is the former director of the Pediatric Epilepsy Surgery Program and Neurobiology Epilepsy Research Laboratory at the David Geffen School of Medicine, UCLA Medical Center. He holds the Dr. Alfonsina Q. Davies Endowed Chair in Honor of Paul Crandall, M.D., for Epilepsy Research and is the principal investigator of the Rare Epilepsies and Brain Disease Bank which is part of the RE (Rasmussen’s encephalitis) Children’s Research Consortium Tissue Transfer Program. He has over 200 research papers to his credit.
His key interests include cortical dysplasias, the neurobiology of epilepsy, and hemispherectomies. Dr. Mathern is board certified by the American Board of Neurological Surgery. He is one of few surgeons certified by the American Board of Clinical Neurophysiology. He received his medical degree from Case Western Reserve University School of Medicine, interned at the Cleveland Clinic Foundation, and was a resident in surgery and then neurosurgery at the UCLA School of Medicine.
He is a member of several organizations including the International League Against Epilepsy, American Association of Neurological Surgeons, the American Epilepsy Society, The Brain Research Institute, and the Society for Neuroscience. His presentation at TedX Conejo gives a compelling example of why parents choose this drastic surgery for their children.
In 2017, Dr. Mathern received a lifetime achievement award from the American Epilepsy Society for his lifetime contributions to the field of epilepsy.
Luke Shepard Board member emeritus (non-voting)
Luke Shepard, was the Algos Engineering Lead at Tempus Labs. Previously, he was Chief Technology Officer of eSpark Learning, an educational software company based in Chicago, Illinois, that provides differentiated instruction in K-8 classrooms using iPads. He also built software for Facebook and Amazon.