BAH FGFR Research Registry Advisory Board
Ellen Morgan, PI.
Board Member
Ellen Morgan is the founder of the PROS Foundation (Pathways for Rare and Orphan Studies), a 501(c)(3) non-profit organization with a mission to accelerate the development of effective treatments for rare diseases. Using their wealth of clinical development experience, PROS is committed to guiding Rare Patient Groups with their registries, natural history studies, identifying disease endpoints, and preparing them for the clinical trial phase.
Ellen has 25 years of drug development experience in large pharma, small biotech and CRO. She founded and led two successful Clinical Research Organizations, Synteract and Agility Clinical, most recently serving as President, Rare Diseases at Precision for Medicine. Agility was dedicated to clinical trials in rare diseases and supporting patient organizations. Ellen received a BS in Chemistry and MS in Management and Industrial Engineering from Rensselaer Polytechnic Institute and post graduate studies in statistics and genetics. In addition to Born a Hero, she is also a Board member for the Rare Disease Ghana Initiative.
Carolina Sommer, PI.
CEO/Founder/President
Carolina is the CEO/Founder of Born a Hero Research Foundation, Founder of the Seattle Rare Disease Fair, and Co-Founder of the NW Rare Disease Coalition.
Born a Hero studies 15 FGFR Syndromes and has established a patient-centered research registry, FGFR Syndromes Research Registry (fgfr.iamrare.org).
The NW Rare Disease Coalition's primary focus is passing and supporting policy on both state and federal levels (such as WA Rare Disease Advisory Council, Newborn Screening, Whole Genome Sequencing, Genetic Testing Reimbursement, and Complex Care Coordination). The NW Rare Disease Coalition is passionate about Collaboration, Genetic Testing, and Cell and Gene Therapy Education.
Dr. Jeffrey Fearon, MD
Dr. Jeffrey Fearon was raised in London, England and New Canaan, Connecticut. After graduating the Mt. Hermon School in Massachusetts, he received his B.A. from Brown University.
He subsequently pursued post-baccalaureate studies at Columbia University and attended medical school at the University of Cincinnati. After completing a full general surgery residency at the Harvard Fifth Surgical Service in Boston, he pursued a plastic surgery residency at the Massachusetts General Hospital, with Harvard Medical School.
Following a one-year craniofacial fellowship at the Children’s Hospital of Philadelphia at the University of Pennsylvania, he joined Dr. Ian Munro at the Dallas Craniofacial Center as a director. Today, Dr. Fearon has an international practice that is limited to craniofacial surgery; specifically, the treatment of pediatric congenital birth defects.
Dr. Amy Merrill-Brugger, PhD
Associate Professor and Chair, Department of Biomedical Sciences, Ostrow School of Dentistry, University of Southern California
Dr. Amy Merrill received her Ph.D. in Biochemistry and Molecular Biology in 2005 from the University of Southern California. During her doctoral studies she used mouse genetics to discover a novel role for cellular boundaries in the pathogenesis of craniosynostosis. From 2005-2007 she did a postdoctoral fellowship at University of California, San Francisco where she uncovered the unique potential of cranial neural crest cells to autonomously control the timing of bone formation in the developing face. Prior to joining the faculty in the Department of Biochemistry and Molecular Biology at USC in 2010, she completed a fellowship in Medical Genetics at University of California, Los Angeles/Cedars Sinai Medical Center.
Dr. Kanwal ‘Ken’ Nischal MD, FAAP, FRCOphth
Professor of Ophthalmology and Chief, Division of Pediatric Ophthalmology, Strabismus and Adult Motility. Director, Pediatric Program Development, UPMC Eye Center. Medical Director of Telemedicine Services, UPMC Children’s Hospital of Pittsburg.
Dr. Nischal attended King’s College Hospital Medical School of the University of London and completed ophthalmology residencies at both Birmingham and Midlands and the Oxford Eye Hospital in the United Kingdom. He completed his pediatric ophthalmology fellowship at The Hospital for Sick Children in Toronto. Prior to joining Children’s Hospital of Pittsburgh in 2011, Ken was at Great Ormond Street Hospital for Children in London, UK.
Dr. Scott Mellis, MD, PhD
Vice President, Early Clinical Development and Experimental Sciences, Rare Disease
Dr. Mellis eceived medical scientist training at Washington University School of Medicine and postgraduate training in Internal Medicine and Rheumatology at Columbia University College of Physicians and Surgeons.
He established the Translational-and Precision Medicine functions at Regeneron and is a co-founder of the Regeneron Genetics Center, a center of excellence that has sequenced over 300,000 human exomes. Dr. Mellis is now leading an effort to optimize Regeneron's development of new medications for patients living with rare diseases.