Matt Flesch

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 Vernick

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

Emily Nicoli is a nurse practitioner passionate about epilepsy advocacy, population health, geriatrics, and palliative care. Ms. Nicoli 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. Ms. Nicoli serves as our 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.

Kaitlyn O’Connor

Kaitlyn O’Connor is a junior at Pitzer College in Claremont, Calif. At school, she has held numerous
leadership positions and played a significant role in multiple fundraising activities, and also serves as a lab research assistant at Pitzer College studying mental health. Kaitlyn is also the first member of the Alliance board to have had neurosurgery to treat medication-resistant seizures and brings much needed personal experience to the board; at the age of 12, she had hemispherectomy to stop seizures caused by Rasmussen’s encephalitis.

Natalie Robinson

Ms. Robinson is a healthcare administration professional with an MBA and certification in Healthcare Management from Pacific Lutheran University. She is a longtime volunteer and has held successful fundraisers for the Soccer Without Borders Foundation and the Danny Did Foundation. She brings expertise in healthcare finance, marketing and content creation, and will serve as the chair of the Alliance’s finance advisory committee.

Taylor Abel, MD

Dr. Abel is the Chief of Pediatric Epilepsy Surgery at UPMC Children’s Hospital of Pittsburgh. He is uniquely committed to kids who live with epilepsy, having had epilepsy as a child and then committing his career to helping kids with seizure disorders. He has contributed to the Alliance as amember of its Scientific Advisory Board for several years.

Aria Fallah, MD, MSc

Dr. Fallah is Director of Pediatric Neurosurgery at UCLA Mattel Children’s Hospital. As a resident, he cared for a two-year-old boy with tuberous sclerosis complex which fueled a career-long
passion in helping people living with epilepsy. He has played a pivotal role in the Alliance by serving on our Registry Advisory Board for many years.

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.

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.