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.
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. Ms. Robinson serves as our treasurer.
Taylor Abel, MD
Dr. Abel is the Chief of Pediatric Neurosurgery and 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 previously contributed to the Alliance as a member of its Scientific Advisory Board for several years.
Aria Fallah, MD, MSc
Dr. Fallah is Clinical Director of Adult and Pediatric Epilepsy Surgery at UCLA. 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.
Ken Lininger
Ken is the owner and operator of Cypress Curb Appeal Services in Houston, Texas, providing property management services. Ken’s company employs several full-time staff, including an adult with special needs. Ken has a mechanical engineering degree from the University of Louisville, Speed Scientific School. He has worked in the aerospace industry providing critical power transformation components as well as the oil and gas industry providing advanced drilling components for exploration drilling. Ken worked as COO of precision manufacturing companies for nearly 20 years before stepping away to care for his daughter, Savanna, who was challenged with epilepsy very early in her life. Ken is married to “God’s greatest blessing in his life”, Rebecca Lininger. They have 4 wonderful children together. Ken says that “Savanna’s journey has created a passion in my walk on this earth to help other parents who find themselves facing a similar challenge.”
Nora Shepard
Nora Shepard is the Director of Growth at Walker Sands, where she drives client growth, optimizes sales processes, and aligns marketing and service teams to deliver impactful results. Previously, she built and scaled the sales function at the internationally recognized personal branding firm SimplyBe., generating over $3M in annual revenue and leading the agency through its acquisition by Hawke Media. Known for her strategic approach and relationship-first mindset, Nora believes that lasting growth comes from genuine partnerships and a commitment to excellence.
Daphne Magdaleno, CPA
Daphne Magdaleno, CPA is an Audit Partner at JGD & Associates in San Diegohere much of her work is focused in the nonprofit sector. Daphne brings over 20 years of professional audit and accounting expertise to the table. She currently serves as the Treasurer for Kids Included Together, a nonprofit focused on providing disability inclusion training to individuals and organizations working with children. Daphne has 3 children, including a 14 year old son who underwent hemispherectomy surgery in 2016 to stop seizures caused by a perinatal stroke.
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 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.