Our Team
STAFF
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Founder & Executive Director
Michele Collins, M.A.
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Michele has a B.A. in Business Administration, a M.A. in Teaching and has taught for fifteen years. She is the mother of a ULD patient who began having seizures at age six, but was not diagnosed with ULD until twenty years later. As the disease progressed, she was forced to leave teaching in order to provide better care for her son, Mike. You can read more about Mike's story on Our Stories page. Years of trying to treat worsening symptoms with an unidentified cause have made her highly motivated to press on toward a cure for ULD. Email: michele@HopeforULD.org
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Chairman of the Board
Christopher Yankaskas, Ph.D.
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Chris is a Research and Development Scientist at Thermo Fisher Scientific. As part of the Advanced Cell Models group, he develops tools to study physiology and disease in a laboratory setting. Chris trained as a postdoctoral fellow at Johns Hopkins University in Baltimore, Maryland, where he also completed his Ph.D. in Chemical and Biomolecular Engineering. His research focused on developing bioengineering tools to understand, predict, and prevent cancer metastasis. Chris has expertise in genetic engineering at the cellular level, including the use of lentiviral vectors and the CRISPR-Cas9 system. Chris’ brother-in-law is a ULD patient whose symptoms are poorly managed by current medical treatments. As both a scientist and family member of a ULD patient, Chris is excited by the potential to treat ULD with emerging gene therapy techniques.
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Vice Chairman of the Board
Keith Raser, M.D.
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Keith has an M.D. degree from Northwestern University Feinberg School of Medicine and is a board-certified adult psychiatrist currently in private practice in central New Jersey. One of her brothers had Down’s Syndrome with a severe intellectual disability. She is the mother of a young adult with autism. She has known Michele Collins for many years and has known Michele’s children since their births. As such she brings multiple perspectives regarding life with and treatment of brain-based conditions and has witnessed how ULD has affected Michele’s son and her family.
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Board Secretary
Steve Gaj
Steve is currently the Facility CIO at the VA medical center in Cleveland, OH. He has been with the VA for over 28 years and has held various positions prior to becoming Facility CIO. Steve attended Clarion University of Pennsylvania where he studied Business Computers. Steve and his family spent many years fostering children and have been a friend to Michele, her son, and her family for over 20 years.
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Board Treasurer and Chief Financial Officer
Mark Scriven, CPA
Mark is a Certified Public Accountant (CPA) licensed in the states of South Carolina and Pennsylvania. He is a Partner in the Financial Institutions assurance practice of Elliott Davis Decosimo, LLC. Prior to joining Elliott Davis Decosimo, Mark worked for six years at PwC.
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SCIENTIFIC ADVISORS
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Pediatric neurologist Dr. Berge Minassian has special expertise in caring for patients with epilepsy, neurodegenerative diseases, and neurogenetic conditions.
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A physician-scientist, Dr. Minassian has spent much of his 20 years of research seeking the underlying genetic causes of epilepsy. He works closely with Children's Medical Center Research Institute at UT Southwestern. While working in Toronto, he discovered some of the genes that cause ULD's sister disease, Lafora.
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“I’ve been working to piece together the brain’s genetic underpinnings – to help us better understand both how the brain works overall and how faulty genes can lead to electrical problems in the brain in conditions such as epilepsy,” he says.
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Board certified and fellowship trained, Dr. Minassian serves as Chief of Pediatric Neurology at UT Southwestern Medical Center and leads the Neurosciences Center at Children’s Health in Dallas. “One of the main reasons I came to UT Southwestern was to develop a gene therapy program aimed at curing various types of epilepsy,” he says. “I really want to help make a fundamental difference in families’ lives by altogether eliminating the problem in as many cases as we can.”
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He also serves on the faculty of the Children’s Health Epilepsy Center, which he notes is “one of the top centers of its kind in the country, if not the world. Everyone who works here does a fantastic job of caring for our patients.”
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Dr. Mayank Verma studies gene therapies focused on the central nervous system in Glycogen storage disorders and Unverricht-Lundborg disease. He is using intrathecal AAV9 as a platform for his preclinical studies. He is also working on validating treatment-responsive biomarkers from his preclinical studies from patients around the USA.
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MEDICAL ADVISORS
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Professor
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Executive Vice Chair, Neurology
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Director, Texas Comprehensive Epilepsy Program (TCEP)
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Co-Director, Texas Institute Of Restorative Neurotechnologies
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Assistant Professor, Psychiatry, CWRU School of Medicine​
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Dr. Shrestha specializes in the areas of Traumatic Brain Injury (TBI), Psychogenic Seizures, Psychosis, Geriatric Psychiatry, Neuropsychiatry, Huntington's Disease, Dementia, Parkinson's Disease, Cognitive Issues, Alzheimer's Disease, and Mood Disorders.
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