Shawn’s mother, Ellen Clark, was diagnosed with Retinal Vasculopathy and Cerebral Leukodystrophy in 2005. After his mother passed away, Shawn was determined to work with a team of scientists to find a cure for RVCL. Through their efforts, the gene mutation that occurs in the TREX1 gene was identified, paving the way to cure RVCL. Shawn founded The Clayco Foundation to raise RVCL awareness, provide educational tools, share research information, highlight active clinical trials, and more. Shawn also created Illumination, an annual Halloween Gala in Chicago, which has raised over $5 million to this lifesaving mission. In addition to The Clayco Foundation, Shawn Clark serves as President of CRG. With over a decade in the commercial real estate industry, Shawn is responsible for providing strategic direction of the company and managing day-to-day operations. In addition, Shawn maintains an active role in deal structuring, fund and project level financing activities, development management, and asset management. Shawn earned his Master’s degree in Real Estate Finance from DePaul University and his Bachelor’s degree in Construction Science and Management from Clemson University.  

Matt is the Chief Executive Officer at Medterra Pharma and has experience in creating and running biotech start-ups around novel, cutting edge scientific advancements and plans. He is an efficient executioner, and able to be nimble and flexible as any project requires. Matt has a track record of increasing value assets and profiles quickly, and able to speak both science and business "languages." Matt has a history of working in the research industry. He is skilled in several wet lab techniques (e.g. Histology, PCR, western blots, ELISA, Dendritic Cells, T cells, Neutrophils, Molecular Biology, Cell Culture, animal work, etc). Matt’s foundational academic and lab experience aids in development decisions, creating more accurate timelines and milestone expectations, and setting up strong contingency plans for all primary goals.  

Roz Skozen is the Director of Community Relations at Clayco. In her position, she is the Chief Developer for the Clayco Foundation's signature Chicago event, Illumination, an innovative playground of light raising money for RVCL. She manages the development programs and relationships for internal and external organizations.

Dr. Andria Ford M.D. is an associate professor of neurology and of radiology in the Division of Stroke and Cerebrovascular Disease at Washington University School of Medicine in St. Louis, with a focus on strokes and neurological disorders. She recently published in Neurology a paper entitled “Lesion evolution and neurodegeneration in RVCL-S: A monogenic microvasculopathy,” which focused on how white brain matter is effected in RVCL patients.  Dr. Ford hopes to use her considerable knowledge of neurology and brain health to help RVCL patients in the future.

Nouri Neamati is the John G. Searle Professor of Medicinal Chemistry at the University of Michigan College of Pharmacy. He obtained a Ph.D. in biomedical sciences from the University of Texas Graduate School of Biomedical Sciences and M.D. Anderson Cancer Center, Houston, Texas in 1995. From 1995 to 2000 he was a postdoctoral fellow and a research fellow at the National Institutes of Health. In September 2000, he joined the University of Southern California School of Pharmacy with a joint appointment at the Norris Comprehensive Cancer Center, rising to the rank of professor in 2011. Dr. Neamati is the recipient of numerous awards including the NIH Technology Transfer Award in 2000, STOP CANCER Award in 2001, GlaxoSmithKline Drug Discovery Award in 2002, BCRP and LCRP Concept Awards from the Department of Defense (DOD) in 2005 and 2009, LUNGevity Discovery Award, American Lung Association, 2006, The Littlefield-AACR Award in Metastatic Colon Cancer Research, in 2006, the Idea Awards in Ovarian and Breast Cancer from the DOD in 2006 and 2010, and a Concept Award in 2012. He has published 200 peer-reviewed manuscripts, 18 book chapters, and over 30 patents in the area of drug design and discovery. He has recently edited the first comprehensive and authoritative book on “HIV-1 Integrase: Mechanism and Inhibitor Design.” He has served in numerous study sections for NIH and DOD. He was the founding editor-in-chief of Current Molecular Pharmacology, an associate editor of Current Anticancer Drug Targets, and an editorial advisory board member of several journals including Expert Opinion on Drug Discovery, Expert Opinion on Investigational Drugs, Hormones & Cancer, and the Journal of Medicinal Chemistry.  

Dr. Rhee is the Principal Investigator of multiple NIH, foundational, and institutional research awards to study vasculitis. Her research interests include clinical and translational research in vasculitis. She led the development of a biorepository at the Penn Vasculitis Center and co-led the development of the Penn Giant Cell Arteritis Fast-Track Program. As co-director of the RVCL Research Center, Dr. Rhee is coordinating many of the clinical research efforts for RVCL at Penn. She is also working with our RVCL Research Team to coordinate the collection of biospecimens for RVCL research studies.