Community Advisory Committee

Simons Searchlight is a partnership of leading scientists, doctors, and families, determined to accelerate the science of genetic changes related to autism and other neurodevelopmental disorders. As part of this mission, Simons Searchlight works with a Community Advisory Committee (CAC) whose purpose is to advise and guide research and community activities on behalf of all Simons Searchlight participants and gene groups. Read more about the current members below.

Sarah Glass

Sarah Glass, PhD is the Chief Development Officer at n-Lorem Foundation.  Sarah received her graduate degree in Molecular Genetics and has over 20 years of experience in clinical development and research across academia, pharmaceutical companies, and CROs. Sarah has experience as an accomplished research geneticist, rare disease drug developer, and clinical trialist. She is most passionate about forging key strategic partnerships across rare disease sectors and driving efficiencies to decrease patient/ caregiver burden in clinical research.

Interestingly, amidst her career focused on genetics, precision medicine and rare diseases, Sarah became the parent of a child with severe health issues.  As many are all too familiar, a 3+ year diagnostic odyssey ended with a diagnosis of DYRK1A syndrome for her son, Ethan. She views the urgency felt by a rare parent combined with the professional expertise and training as an obligation to aggressively drive the field of rare disease therapeutics forward- for her son and the broader rare disease community.  Sarah translates this urgency into n-Lorem’s paradigm shifting non-profit platform solution for nano-rare diseases (n<30).   Sarah is the chair of the DYRK1A Medical and Scientific advisory board and is engaged in many rare disease organizations to ensure collaboration in reaching our common goals.  She lives with her husband and two children in Durham, North Carolina.

Kris Pierce

Kris is rare disease advocate and health professional with Masters Degrees in both Health Science and Wellness and a background in nursing. After a 14yr odyssey Kris’s family received the diagnosis for their son, Will, who has SCN2A. Kris is a co-founder of Genetic Epilepsy Team Australia, founder of SCN2A Australia and has previously served as a board member in the disability sector. Kris is passionate about empowering consumers to have a voice in their care and outcomes. In 2020, Kris was appointed as the Consumer Engagement and Advocacy Manager for the Kids to Adults Alliance, an Australian network of researchers, clinicians and advocates. Kris consults to hospital boards, industry and community groups, ensuring quality consumer engagement across the health and disability sectors.

Taruna Reddy

Taruna received her Masters Degree in Mechanical Engineering from Columbia University in the City of New York. Previously she worked in Global Structured Products at various investment banks. Her daughter Alya has PACS1 Syndrome.

Charlene Son Rigby

Charlene is the Chief Executive Officer of RARE-X. She has spent her career building organizations at the intersection of data, technology, and life sciences. Charlene was previously Chief Business Officer at Fabric Genomics and held executive roles at enterprise software and genomics companies, including Oracle and Doubletwist. She started her career in neuroscience research at Roche. When Charlene’s daughter was diagnosed with a rare genetic disease, she co-founded the STXBP1 Foundation. She is committed to finding a cure for her daughter’s disorder. Charlene’s unplanned connection between her personal life and profession has helped push forward the search for a cure for her daughter and kids like her and given her work deeper meaning. She holds a B.A. in Human Biology from Stanford University and an M.B.A. from the Haas School of Business at U.C. Berkeley.

Gina Tan

Gina Tan is a co-founder of Cure CLCN4, a charity dedicated to helping further medical research into CLCN4, a gene associated with neurodevelopmental delays, epilepsy and autism. She is a mother to two daughters, the younger of whom has a variant of CLCN4. Professionally she is a medical doctor, sub-specialising in Rheumatology. She lives in London, UK.

Caroline Cheung-Yiu

Caroline is mother of Alex diagnosed in 2018 with a previously undiagnosed progressive neurodegenerative disorder caused by mutation of the IRF2BPL gene. This very rare recently discovered disease is also known as neurodevelopmental disorder with regression, abnormal movements, loss of speech, and seizures (NEDEMSS). It was a diagnosis that ended a long 12 year diagnostic journey for the Yiu family. While relentlessly seeking answers for her son’s constantly shifting illness, she created the Community of Undiagnosed Rare and Extraordinary (CURE), formerly the San Diego Undiagnosed Family Support Group to connect families lacking a diagnosis for their child, empowering them with local resources to forge ahead in their diagnostic odyssey. She strives to bring awareness of NEDAMSS to the public, medical and research communities and continues to advocate for those families still seeking a diagnosis.