Accelerating the development of life-changing treatments for ARID1B-RD
FAR is dedicated to pursuing an aggressively funded research agenda aided by the world's leading scientific, biomedical, and clinical experts. We aim to bring the most promising treatment strategies into medical practice as fast as possible. A board of parents runs FAR, and we are actively working to establish the scientific advisory board.
The Parents Board of the Foundation is responsible for making sure that the day-to-day operations of the foundation run smoothly. They also The Board also helps to make decisions about what projects we take on, and who we partner with.
Gal Lazarus co-founded FAR after his son Nour was diagnosed. Gal is committed to doing everything possible to harness the best of science for the well-being of every child with ARID1B-RD.Gal is an incoming psychology assistant professor at the Hebrew University of Jerusalem (currently a postdoc at UC Berkeley/KU Leuven). He has a decade of research experience in the field of clinical psychology, particularly in ambulatory assessment and psycho-behavioral interventions. Gal is also a clinical psychologist.
Clarissa Ward co-founded FAR after being inspired by the love and determination of a group of parents, striving to give their children a better life. Her four-year-old son, Ezra, was diagnosed with the genetic anomaly in 2019. Clarissa is CNN’s multi award winning, chief international correspondent and the author of “On All Fronts: the Education of a Journalist.” For nearly twenty years, she has covered conflicts and crises from frontlines around the world.
Caroline has two beautiful boys – Ariel and Noah. Noah was diagnosed with ARID1B-RD when he was two. Caroline lives in the UK and has decades of expertise in not-for-profit organisational strategy, management and fundraising with particular interest in translational research and life sciences. Most recently Caroline worked as Director, setting up the Follicular Lymphoma Foundation – the first charity in the world dedicated to driving treatments and cures for this currently incurable blood cancer. She became one of the founding Board members of FAR from a passionate belief in exploring all options to help our children live their very best lives.
Elizabeth lives in Chevy Chase, Maryland with her husband, Jimmy, two sons, Fitz and Charles, and their dog Linus. Charles was diagnosed with an ARID1B de novo mutation a few weeks shy of his first birthday, and since that diagnosis, Elizabeth and her family have committed themselves to focus on providing Charles with every possible opportunity to learn, grow, and thrive, while also searching for additional opportunities for medical support. Prior to Charles' diagnosis, Elizabeth's professional experience spanned nearly twenty years of strategic alliance and corporate partnership management in the public, not-for-profit and private sectors.
Omri is married to Nirdi, father of two adorable children, Alma and Itamar, living in Pardes-Hanna, Israel. Itamar, his youngest son, was diagnosed with ARID1B mutation just before his first birthday. Omri is a medical doctor currently practicing medicine in the Israeli Navy. He holds a Master’s in public health and a sports medicine diploma. Omri published a few research papers in the fields of public health and pediatrics. In his spare time, he enjoys running and hiking in nature with his family.
Rachael joined FAR’s Board four years after her daughter Cece received an official diagnosis. The frustrations and struggles experienced throughout the diagnostic process drive Rachael to participate in the mission of the board, to help improve the lives of all individuals living with ARID1B-RD. Rachael has spent the past 13 years working in Intellectual Property and currently works as a Project Manager. Rachael’s experience includes customer service, leadership, Tier 1 application support, data analytics, and project management.
We are working actively to establish a scientific advisory board composed of experts across leading hospitals, academic medical centers, and the biopharmaceutical industry.
Dr. Kadoch is an Associate Professor of Pediatric Oncology at the Dana-Farber Cancer Institute and Harvard Medical School, Institute Member and Epigenomics Program Co-Director at the Broad Institute of MIT and Harvard, and Investigator of the Howard Hughes Medical Institute. She is also the Scientific Founder of Foghorn Therapeutics (NASDAQ: FHTX). She established her independent laboratory in 2014, and was one of the youngest scientists ever appointed to the Harvard Medical School faculty at the age of 28. She has quickly become a leading expert in chromatin and gene regulation and is internationally recognized for her groundbreaking studies in these areas. Specifically, her laboratory studies the structure and function of nuclear protein complexes that govern DNA architecture and gene expression, particularly, the mammalian SWI/SNF or BAF family of chromatin remodeling complexes in to which ARID1B assembles. Her team focuses on how perturbations to genes encoding chromatin remodeling complex subunits, such as ARID1B, drive diseases from neurodevelopmental disorders to cancers. Excitingly, her innovative basic science work has catalyzed the development of several ongoing therapeutic development programs aimed to target a range of human diseases. Dr. Kadoch has received numerous prestigious awards and research grants to support her academic laboratory at Harvard, including the NIH Director's New Innovator Award, the American Association for the Advancement of Sciences (AAAS) Marin and Rose Wachtel Cancer Research Prize, and the American Association for Cancer Research (AACR) Outstanding Achievement in Basic Cancer Research Award, and the FASEB Excellence in Science Award. Additionally, over the past several years, she was named to the Forbes 30 Under 30 list, MIT Technology Review 35 Innovators Under 35, Popular Science Brilliant 10, Business Insider Top 30 Young leaders in Biopharma and Blavatnik National Awards. Cigall earned her Ph.D. in Cancer Biology at Stanford University.
Dr. Santen is a clinical geneticist and scientist at Leiden University Medical Center (LUMC) where he sees patients with ARID1B-RD, CSS, and other genetic conditions. Upon starting his position at LUMC (2008), Dr. Santen independently implemented a bio-informatic pipeline, developed an in-house annotation pipeline, and wrote scripts for LUMC's diagnostic laboratory to analyze exome data. This led to several gene discoveries, of which the ARID1B-gene had the most impact on his scientific career. For the last 10 years. Dr. Santen has studied has studied the ARID1B-gene extensively and published numerous papers on it.
Cristina is a Consultant in Clinical Geneticist and Genomic Medicine and Clinician Scientist at the King's College London and The Francis Crick Institute. Her overarching research interest over the years has been the application of high throughput omics technologies in the identification of causes and mechanisms of rare disease. Cristina's research focuses on understanding how gene mutations contribute to altered early brain development leading to intellectual developmental disorder (IDD) and learning disabilities. Specifically, her group aims to understand the role of chromatin remodellers in neurodevelopment and the mechanisms by which their dysfunction cause IDD. Aligned with this, she is leading a clinical study - BUILD (BAF complex & related genes underlying intellectual disability) - a collaboration between Great Ormond Street Hospital, the Francis Crick Institute and King's College London.
Prof. Ahituv is a faculty member in the Department of Bioengineering and Therapeutic Sciences at the University of California, San Francisco. Prof. Ahituv studies gene regulatory elements and their role in human diversity and disease. In his work he uses various genomic tools to identify genes, genetic pathways, and gene regulatory elements that are involved in neurodevelopmental disorders (and other conditions). Additionally, his lab is utilizing cis-regulation therapy (CRT) to precisely target cis-regulatory elements in the genome and alter the expression levels of their target genes to treat genetic disorders.
FAR aims to become a hub for translational ARID1B research by forming collaborations with academic researchers, biopharma companies, the patient community, and similar rare-disease advocacy organizations.
We are deeply committed to knowledge and data sharing.
To collaborate with FAR, please contact us.