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Our Team

Meet Our
Board of Directors

At the heart of our mission to support individuals and families affected by NEDAMSS is a Board of Directors united by passion, purpose, and personal connection. Our board is made up of caregivers, advocates, and professionals—all of whom have direct experience with rare disease. They bring invaluable insight, empathy, and leadership as they guide our vision, ensure accountability, and help us drive meaningful change. 

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Erin Morgan

President, Founder, Parent

Erin is a dedicated advocate for individuals impacted by rare diseases, driven by her personal experience as a mother of a daughter diagnosed with IRF2BPL-Related Disorder in 2024. Professionally, Erin works in Human Resources for an engineering firm which fuels her passion to connect with the patient population and ensure Tough Genes has positive and effective communication. As a drag racer, and member of Tough Genes Racing, Erin brings the same drive, precision, and determination to the track that she does to the fight for a cure for NEDAMSS. Her empathy, resilience, and insightful guidance drive Tough Genes forward. 

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Krysti Baxter

Secretary, Founder

Krysti plays a vital role in both organization and communication—ensuring our board’s efforts are strategically documented, coordinated, and shared. She is the Director of Global Supply Chain for a high-tech contract manufacturing & design firm. With meticulous attention to detail and a personal passion for the rare disease community, Krysti manages critical governance processes, prepares essential meeting records, and upholds our standards of transparency and accountability.

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Edward Norton

Board Member, Parent

Edward Norton resides in California with his wife and son. His son was diagnosed with IRF2BPL disorder in 2023, and since then, Edward has avidly supported research and understanding of IRF2BPL/NEDAMSS.

His background is in technical project management for companies such as Panasonic and Sony. He also worked as a writer within the entertainment industry for Fox Sports. He changed careers to public education several years ago to better support his child’s needs.

 

“I’m very thankful to be part of a driven foundation like Tough Genes, and of the larger IRF2BPL/NEDAMSS community as a whole. Together, we can help every child with this rare disease.”

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Josh Morgan

Vice President, Founder, Parent

Josh brings passionate leadership and a deeply personal commitment to his role as Vice President of Tough Genes as the father of a child diagnosed with IRF2BPL in 2024. He works in automotive research and engineering and brings this technical fast paced expertise to Tough Genes. A drag racer, and member of Tough Genes Racing, Josh applies the same focus, discipline, and commitment to the mission of Tough Genes as he does on the track. Josh collaborates closely with researchers and caregivers to foster connections, secure vital funding, and raise awareness at every level.

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Lisa Norton

Board Member, Parent

Lisa Norton is the mother of a child diagnosed with IRF2BPL disorder in late 2023. Since receiving the diagnosis, she has dedicated herself to supporting research and advocating for the IRF2BPL community, drawing on her academic and professional background. She earned dual undergraduate degrees in psychology and anthropology. She was a member of Psi Chi, the International Honor Society for Psychology, and was a laboratory research assistant for years in both cognitive neuroscience and anthropology labs. She received multiple scholarships and successfully wrote and secured grants to fund research and presentations at both national and international conferences. Her contributions have also earned honorable mentions in academic journals.

Upon graduating, she relocated to Los Angeles to pursue her master’s degree in anthropology at California State University, Northridge. During this time, she also worked as an anthropological consultant for Far West Films and National Geographic (including on the documentary Collapse). Lisa transitioned into corporate recruiting during her master’s program and has remained in that field for over a decade. She worked for one of the top global Fortune 500 companies for 13 years and currently works as a recruiter for the executive search firm, Hoxton Circle.

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By joining the Tough Genes’ board she hopes to raise funds for IRF2BPL research to help all of those affected by this rare disease.

Meet Our
Scientific Advisory Board

At Tough Genes, we’re guided by a world-class Scientific Advisory Board composed of leading researchers, clinicians, and innovators in genetics, epilepsy, and personalized medicine. Their expertise ensures that our work is grounded in cutting-edge science, ethical practices, and a deep understanding of the evolving landscape of genetic health. With their guidance, we’re pushing the boundaries of discovery—responsibly and rigorously.

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Orrin Devinsky, MD

NYU Langone Comprehensive Epilepsy Center, Professor 

Department of Neurology at NYU

Orrin Devinsky is Professor of Neurology, Neuroscience, Neurosurgery, and Psychiatry at the NYU Grossman School of Medicine, where he has directed the Epilepsy Center for more than 30 years. He founded the Saint Barnabas Institute of Neurology & Neurosurgery. His research has contributed to the FDA approval of more than 10 medications, including his role as lead investigator for the only approval of a cannabis-based medication (cannabidiol/Epidiolex) for which Time Magazine named him one of the top 10 people who transformed medical therapies in 2018. Dr. Devinsky has published more than 650 peer reviewed papers in journals including The New England Journal of Medicine, Journal of the American Medical Association, Science, Nature, Neurology, and Lancet Neurology.  His academic work has consistently been cited among the top 1% of American researchers. Dr. Devinsky has served on more than 20 boards of directors and scientific boards for non-profits such as the Epilepsy Foundation, and rare disease foundations, as well as companies focused on advancing novel therapies for disorders with high unmet needs.  He founded Finding A Cure for Epilepsy and Seizures (FACES), which has raised more than $100 million for research and programs, and co-founded the Epilepsy Therapy Project and epilepsy.com.  

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Donna Martin, MD, PhD

C.S. Mott Children's Hospital University of Michigan Health, Professor & Chair, Department of Pediatrics

Professor of Human Genetics

Dr. Donna Martin is a distinguished physician-scientist. She serves as the Chair of Michigan Medicine’s Department of Pediatrics and is the Ravitz Foundation Endowed Professor of Pediatrics and Communicable Diseases. She is a Professor of Pediatrics and Human Genetics in the University of Michigan Medical School and is also a faculty member of the Michigan Neuroscience Institute and the Kresge Hearing Research Institute. Her NIH-funded research focuses on the genetic basis of neural development and disorders of human development, and her laboratory studies genes that influence neuronal stem cell proliferation, differentiation, and migration. A board-certified clinical geneticist, Dr. Martin has mentored numerous graduate students and postdoctoral fellows and has led collaborative studies on autism and other neurodevelopmental disorders. She has received several honors, including the 2022 American Association for the Advancement of Science (AAAS) Fellow designation for her contributions to developmental neuroscience. Dr. Martin's leadership extends to her role as Chair of the Department of Pediatrics, overseeing 17 divisions and more than 200 faculty members dedicated to pediatric care, research, and education.

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Yong-Hui Jiang, MD, PhD

Yale School of Medicine, Professor & Chief of Medical Genetics 

Dr. Yong-hui Jiang is a Professor and Vice Chair of Genetics, Neuroscience, and Pediatrics at Yale School of Medicine, as well as the Chief of Medical Genetics at Yale New Haven Hospital. He is a physician-scientist and an active, practicing physician at Yale Children’s Hospital and Yale Hospital. Dr. Jiang received his MD from Shanghai Medical College of Fudan University with highest honors in China, and his PhD in Human and Molecular Genetics at Baylor College of Medicine under the mentorship of Arthur Beaudet. He completed a residency in pediatrics and fellowships in clinical genetics and medical biochemical genetics at Texas Children’s Hospital and Baylor College of Medicine. He is board-certified in Clinical Genetics and Medical Biochemical Genetics by the American College of Medical Genetics and Genomics. Dr. Jiang’s clinical interests include inborn errors of metabolism, as well as the genetic evaluation of neurodevelopmental disorders and rare genetic conditions. He is the Director of the Yale National Organization of Rare Disease Center of Excellence for Rare Diseases. Additionally, Dr. Jiang is the Principal Investigator at the Yale Diagnostic Center of Excellence for Undiagnosed Diseases, a clinical site of the NIH Undiagnosed Diseases Network (UDN). Dr. Jiang’s research program focuses on investigating the molecular and neurological bases of human neurodevelopmental and neurobehavioral disorders, with a particular emphasis on autism spectrum disorder (ASD), Angelman and Prader-Willi syndromes, Phelan-McDermid syndrome, PURA syndrome, TUSC3 syndrome, and HIST1H1E (H1-4) syndrome in humans and model organisms. He is a member of several NIH consortium projects, including a UG3/UH3 project from the NIH Center for Advanced Translational Science, which aims to develop a CRISPR gene-editing-based treatment for neurogenetic diseases.

We are proud to support our rare disease community. 

Would you like to learn more about our board or what we are up to?

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