Founder & Executive Director
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
Chairman of the Board
Christopher Yankaskas, Ph.D.
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.
Vice Chairman of the Board
Keith Raser, M.D.
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.
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.
Board Treasurer and Chief Financial Officer
Mark Scriven, C.P.A.
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.
Pediatric neurologist Dr. Berge Minassian has special expertise in caring for patients with epilepsy, neurodegenerative diseases, and neurogenetic conditions.
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.
“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.
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.”
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.”
Dr. Steven Gray earned his Ph.D. in molecular biology from Vanderbilt University in 2006, after receiving a B.S. degree with honors from Auburn University. He performed a postdoctoral fellowship focusing on gene therapy in the laboratory of Jude Samulski at UNC Chapel Hill. He is currently an Associate Professor in the Department of Pediatrics at the University of Texas Southwestern Medical Center.
Dr. Gray’s core expertise is in AAV gene therapy vector engineering, followed by optimizing approaches to deliver a gene to the nervous system. His major focus is in AAV vector development to develop vectors tailored to serve specific clinical and research applications involving the nervous system. These include the development of novel AAV capsids amenable to widespread CNS gene transfer. As AAV-based platform gene transfer technologies have been developed to achieve global, efficient, and in some cases cell-type specific CNS gene delivery, his research focus has also included preclinical studies to apply these reagents toward the development of treatments for neurological diseases. Currently these include preclinical studies for Rett Syndrome, Giant Axonal Neuropathy (GAN), Tay-Sachs, Krabbe, AGU, and Batten Disease, and have expanded into human clinical studies to test a gene therapy approach for GAN.
Dr. Gray has published over 50 peer-reviewed papers in journals such as New England Journal of Medicine, Molecular Therapy, Nature Biotechnology, Gene Therapy, and The Proceedings of the National Academy of Sciences. He also has 3 pending patents. His research is funded by the National Institute for Neurological Disorders and Stroke, as well as numerous large and small research foundations. Dr. Gray was recently recognized with the 2016 Healthcare Hero award by the Triangle Business Journal, and his work on GAN was featured in a story by the CBS National Evening News in 2015.
Executive Vice Chair, Neurology
Director, Texas Comprehensive Epilepsy Program (TCEP)
Co-Director, Texas Institute Of Restorative Neurotechnologies
Assistant Professor, Psychiatry, CWRU School of Medicine
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.