• Nasha Fitter, CEO

    Nasha Fitter co-founded the FOXG1 Research Foundation shortly after her daughter Amara was diagnosed. She is dedicated to finding a cure for every child in the world who has FOXG1 syndrome.

    Nasha is the Vice President of Rare and Neurological Diseases for Invitae, formerly consumer health-tech company Ciitizen. Nasha is also on the public board of the ACMG Foundation for Genetic and Genomic Medicine.

    Formerly, Nasha was the founder and CEO of tech startup Schoolie, as well as a Director at Microsoft Corp. Nasha 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 ten-year-old Josie, who has a severe mutation of the FOXG1 gene. With more than two decades of experience in media and communications, Nicole serves as Executive Director overseeing every vertical across the organization.

    Nicole was a co-founder and Director of Communications for streaming music service, Qello Concerts, sold to Stingray in 2018. Prior, Nicole was a producer for CNN and NBC, and worked in Corporate Communications for several Fortune 500 companies.

  • 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.

  • Magdalena Labbe, Secretary & Int'l 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.

  • 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.

  • Hourinaz Behesti, Ph.D., Director of Science

    Dr. Behesti is a developmental neurobiologist from the Rockefeller University (New York). She has developed models to study the dynamics of human brain development and has been studying the cellular and molecular functions of autism-risk genes in the cerebellum. Dr. Behesti oversees the Foundation’s research portfolio. She works closely with the CEO and Scientific Advisory Board on the foundation’s scientific strategy and implementation of research projects.

  • Bram van den Bergh, Treasurer

    Bram joined the foundation in 2021 and is father of two-year-old Benjamin, who was diagnosed with a FOXG1 mutation.

    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 corporate and investment bank, Natixis where he is a Director in the structural balance sheet risk team.

    Previously, Bram was head of asset and liability management for Asia Pacific at Natixis Hong Kong. Bram has a Masters of Science in Financial Management with a degree from Tilburg University.

1 of 7
  • 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 Vice President of Business Development at Ultragenyx, a company specializing in the development of therapies for the treatment of rare genetic diseases.

    Prior, Yael was 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.

  • John Lambeth

    John Lambeth is the Founder and President of Civitas law firm that specializes in developing unique funding strategies for tourism and travel promotion. He is the expert in tourism district creation. John provides pro-bono legal services to the Foundation. John is also a FOXG1 great uncle to our CFO’s son, Crosby.

  • Peter Shapiro

    Peter Shapiro is an independent music entrepreneur who owns and operates renowned venues, including Brooking Bowl, the Capital Theater; created legendary events, such as Fare Thee Well, Lockn’ music festival, and more. He is the publisher of Relix magazine and sits on the board of several nonprofits, including: The Rock and Roll Hall of Fame Museum, NY Public Radio, City Park Foundation, and is Chairman of Headcount.

FOXG1 Research Foundation Global Chapters & 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! contact@foxg1research.org