Board of Directors and Executive Team

Nasha Fitter

CEO
Nasha Fitter co-founded the FOXG1 Research Foundation shortly after her daughter Amara was diagnosed.

Nasha is a leader in the rare disease space through her work on utilizing real world evidence to accelerate treatments. She co-founded and is the Chief Business Officer at Ciitizen, a patient-directed healthcare platform for rare and complex diseases. Formerly, Nasha was the founder and CEO of education-tech company Schoolie, which was acquired in 2016 by GreatSchools. She was a Director at Microsoft.

Nasha serves on the public board of the ACMG Foundation for Genetic and Genomic Medicine and has an MBA from the Harvard Business School.

Nicole Johnson

Executive Director
Nicole Johnson is the co-founder of the FOXG1 Research Foundation and mother to Josie, who has FOXG1 syndrome.

With more than two decades of experience in media and communications, Nicole serves as Executive Director overseeing every vertical across the organization. Nicole is also the author of “Joyfully Josie,” a children’s book that teaches children about disabilities and creator of the Live Joyfully DEI and SEL education program.

Nicole was a co-founder and Director of Communications of streaming music service, Qello Concerts, sold to Stingray in 2018. Prior, Nicole was a TV producer for CNN and NBC.

Ryan Phillips

CFO
Ryan Phillips joined the Foundation in 2020 after receiving his son Crosby's diagnosis. He is dedicated to further our strategic research efforts and empower board decisions with financial analysis to support research goals.

Ryan is an Investment Officer at CalSTRS and was formerly Assistant Vice President at State Street. He has a decade of experience in the finance field where he has worked for large institutions in investment banking and management.

Dr. Soo-Kyung Lee

Chief Scientific Officer
Om P. Bahl Endowed Professor, leading neuroscientist on FOXG1 syndrome, and mom to a daughter with FOXG1 syndrome, Dr. Lee leads the FOXG1 Center of Excellence translational research at the University at Buffalo. Dr. Lee pioneered biochemical and molecular approaches in mouse and chick embryos to unravel the fundamental principles controlling gene expression and cell fate specification in the developing CNS. This led to a series of seminal discoveries into the gene regulatory network required for neuronal fate specification.

Gai Ayalon, Ph.D.

Chief Drug Development Officer
Gai Ayalon, Ph.D., is a neuroscientist leading the FOXG1 Research Foundation through clinical drug development. Dr. Ayalon previously worked at Ultragenyx Pharmaceutical, where he led clinical development programs for pediatric neurodevelopmental disorders, as well as launched and piloted clinical readiness teams designed to streamline and optimize the transition of programs from the preclinical stage to clinical trials.

Elli Brimble

Director of Clinical Research
Elli Brimble leads the Foundation’s clinical research and natural history work. Elli is currently Director of Rare Diseases at Invitae, formerly Ciitizen. Elli was a genetic counselor in Child Neurology at Stanford Children’s Health. She also co-directed Stanford’s Neurogenomics program where she worked on the creation of Natural History Studies for rare, neurological disorders.

Magdalena Labbe

Secretary and International Liason
Magdalena joined the Foundation’s Board of Directors in August of 2019 just a few months after her son Diego was diagnosed. Magdalena and her family live in Chile.

Magdalena has over 15 years of experience in different executive human resources roles for global companies leading geographically diverse and multicultural teams.

Bram van den Bergh

Treasurer
Bram joined the foundation in 2021 when his son Benjamin was diagnosed with FOXG1 syndrome.
Bram has more than 15 years of financial services industry experience and has worked at financial institutions ABN AMRO, Royal Bank of Scotland, Barclays, and currently works at Natixis where he is a Director in the structural balance sheet risk team.

Nikhil Shingte

Bioinformatics Lead
Nikhil joined the foundation in 2023 after his daughter Sara was diagnosed with FOXG1 syndrome. He is dedicated to supporting research goals with bioinformatics and data science. He is a Senior Principal Software Engineer at Dell Technologies with more than 14 years of Software Industry experience and has worked at institutions such as Equifax, ETRADE Financial

Business Advisory Board

Tom Horton

Tom Horton is the former Chairman and Chief Executive Officer of American Airlines. Tom is also the Lead Director on the Boards of Walmart, General Electric, and Qualcomm.

Tom joins the FOXG1 Research Foundation to help solve the most meaningful challenge of his life: finding treatment for his first granddaughter, Gianna, who was diagnosed with FOXG1 syndrome in early 2021.

Neil Kumar, Ph.D.

Dr. Kumar is the CEO and co-founder of BridgeBio Pharma, a company focused on developing and delivering medicines for rare, genetic diseases.

Prior, Neil has served as CEO of Eidos Therapeutics, Inc., interim Vice President at MyoKardia, Inc. and Principal at Third Rock Ventures.

Yael Weiss, M.D, Ph.D.

Dr. Weiss is CEO of Mahzi Therapeutics, a biotech company that specializes on developing therapies for patients with rare genetic neurodevelopmental disorders.

Prior, Dr. Weiss was VP of Business Development at Ultragenyx; Executive Director at Merck, Director of Medical Affairs and Business Development at Genzyme Israel, and Vice President at Columbine Ventures.

Bruce Leuchter, M.D.

Dr. Leuchter is President & CEO, Neurvati Neurosciences that focuses on rare pediatric neurodevelopment conditions. He brings wide-ranging experience in academia, clinical medicine, and industry. Dr. Leuchter is on the Scientific Advisory Committee for the Daedelus Fund for Innovation at Weill Cornell Medical College, and as a member of the Life Science Institute Leadership Council and Drug Discovery Advisory Board at The University of Michigan.

Oliver Roll

Oliver Roll is the foundation’s Chief Investment Officer and FOXG1 dad to Amara.

Oliver serves as the Chief Communications Officer for SAP. Prior, he served as the Chief Communications Officer for VMware and Cisco and has led the communications function for Microsoft’s Office Division and Microsoft’s global operations.

Premal Shah, Ph.D.

Dr. Shah is the CEO of MyOme, a personalized medicine company that helps families understand their DNA and how it can impact their health and well-being, based on the latest science. Prior, Premal was President, COO and co-founder at Ciitizen, a leading digital health company. Before Ciitizen, Premal was CEO at Applied Proteomics.

Natural History Study Key Opinion Leaders

Eric Marsh, M.D., Ph.D.

Dr. Marsh is a pediatric neurologist and has particular clinical interests in developmental epilepsies, neurodevelopmental disabilities, and cortical malformations. Eric is the Clinical Director at Penn Orphan Disease Center and Associate Professor in Child Neurology and Pediatrics at Children’s Hospital of Philadelphia (CHOP). He also serves as the Director of the CHOP Rett and Related Disorders clinic.

Pam Ventola, Ph.D.

Dr. Pam Ventola is an Associate Professor at the Yale Child Study Center and a Senior Science Director within the Rare Disease and Pediatric Center for Cogstate, a leading neuroscience tech company. She conducts diagnostic and psychological evaluations of individuals with intellectual and developmental disabilities and supports endpoint selection, methodology, rater training, and data analysis for rare disease clinical trials.

Christopher Hart, Ph.D.

Dr. Hart is the co-founder, CEO and President of Creyon Bio. Prior, he built the functional genomics department at Ionis Pharmaceuticals where he was responsible for the company’s genomics and bioinformatics efforts that included the development of antisense oligonucleotide predictive analytics for lead identification and enhancement. Chris has also been a science advisor to the White House.

Nadia Bahi-Buisson, M.D., Ph.D.

Dr. Bahi-Buisson is a pediatric neurologist and professor at Necker Enfants Malades University Hospital in Paris, where she conducts the rare disease program on Rett syndrome and brain malformation. She is also part of the group "Genetics and Cerebral cortex development" (A Pierani) of the Imagine Institute at Paris Descartes University.

Heather Olson, M.D.

Dr. Olson is a pediatric neurologist at Boston Children’s Hospital and researcher at Harvard Medical School with a focus on neurogenetic disorders and epilepsy.

Heather also serves as the director of the CDKL5 Center of Excellence, a combined clinical and research program.

FOXG1 Research Foundation Global Chapters and Affiliates

We have created the template for FOXG1 Research Foundations to launch across the globe, under one umbrella, all working together strategically towards the same goal. We are stronger together. If you would like to start the FOXG1 Research Foundation in your country, please reach out to us! [email protected]

FOXG1 Research Foundation Australia

Steve Hille

FOXG1 Research Foundation España

Monica Guijarro Santos

Rosi García Aguilera

FOXG1 Research Foundation France

Stéphanie Reynier

Worldwide Volunteers

The FOXG1 Research Foundation is the global organization dedicated to improving the lives of every person diagnosed with FOXG1 syndrome worldwide. We have an incredible team of volunteers, which includes our Parent Support Team and worldwide Points of Contacts who help families in their respective region connect to the community and navigate this journey.

If you would like to join a FRF volunteer team and/or become a Point of Contact in your region, please email us at [email protected].