Kaia Lee Dalamo is a Nurse Practitioner with her Doctor of Nursing Practice degree from the University of Arizona. She hails from Tucson, Arizona, but has been living in Manhattan for the past 3 years, while she has worked at the Dysautonomia Center. Seeing her patients happy and pursuing their dreams despite health issues makes her happy, and she gets fulfillment in her job when she can contribute to this and sees a difference in people’s lives. In her spare time, she also lives a full and happy life, and is a painter, sewer, dancer, hiker, and mom of 2 wonderful dogs, Lazarus and Scout.

Lanie Etkind joined the FD Foundation as Executive Director in September 2017. With a background in development and fundraising, Lanie’s previous professional experience has included roles at the New York Philharmonic, Beth Israel Medical Center, United Hospice of Rockland and The New Jewish Home. A graduate of Newcomb College of Tulane University, and the mother of two grown children, Lanie lives in New York City.

Born and raised in London, England and living in Israel for many years, Adrian is a chemist by training with a PhD in materials and more than 30 years experience in new drug development. Much of that time was spent at Teva Pharmaceutical Industries in different leadership roles in Innovative R&D, contributing to the successful development of multiple products including Copaxone, Azilect and Austedo. Adrian now leads the pharmaceutical development at Neuroderm, an Israeli drug-device combination company owned by Mitsubishi Tanabe developing new therapies for CNS disorders including Parkinson’s Disease. Adrian is the father of three grown up daughters, the youngest being Tamar aged 21 who has FD.

A longtime member of the Familial Dysautonomia Foundation board, Faye Ginsburg has served as its president since 2012. Dr. Ginsburg is a Professor of Anthropology at NYU Arts and Science and is Co-Chair of the NYU Center for Disability Studies. A MacArthur Fellow, Faye was selected by the NYU student body as a recipient of the 2021 NYU Martin Luther King Faculty Award for her contributions to social justice. Together with her husband Fred Myers, Faye is a parent to Samantha Myers, age 33, who has FD.

Dr. Alejandra González-Duarte officially joined the Dysautonomia Center at NYU Langone as its Associate Director during the summer of 2021. She had previously trained with Dr. Kaufmann at the Dysautonomia Center as an Autonomic Fellow during 2008-2009. Dr. González-Duarte, a native of Mexico City, holds specialties in internal medicine and neurology, completed postdoctoral fellowships in neuroinfectious diseases and autonomic nervous system disorders, and achieved a master’s degree in bioethics. Dr. González-Duarte has focused her research and clinical practice on rare autonomic disorders and she cares for patients with infectious, inflammatory, and degenerative autonomic disorders.

Dr. Kaufmann is the Director of the Dysautonomia Center and leads the clinical research program in familial dysautonomia (FD) at NYU School of Medicine. Over the last decade, he has helped better understand the neurological underpinnings of the disease and brought new therapies to the clinic. He will talk about research updates and the impact that they have on the lives of patients and families with FD. He will also speak about the new clinical trial opportunities that patients with FD can participate in.

Zenith Khan is a UCLA-trained Family Nurse Practitioner with a Master's degree in Nursing. She has worked in a variety of specialties, including immunology, pulmonary medicine, pediatrics, solid organ transplantation, gastrointestinal medicine, and epilepsy. Zenith is a doctoral student at the prestigious Rory Meyers School of Nursing, where she is working on advancing clinician knowledge of familial dysautonomia, afferent baroreflex failure, and other autonomic disorders in order to raise awareness and knowledge of FD.

Mecky is a project assistant who provides administrative support and is involved in FD research including data entry and analysis.

Frances Lefcort is a Research Professor at Montana State University and her lab studies the molecular, cellular, and systems-wide mechanisms that cause the clinical symptoms of Familial dysautonomia. She obtained her Ph.D in Neurobiology from University of California, Berkeley, and did post-doctoral studies at the University of California, San Francisco before starting her own lab on neural development in Bozeman, MT in 1994.

Lee-Ann Lugg is the program coordinator and administrative lead at the Center. She has been a critical part of our team for 9 years

Bio Coming Soon

Patricio Millar is a neurologist trained in autonomic disorders and movement disorders. He joined the Center in 2019 as a research fellow after completing specialized training in neurology and subspecialty training in movement disorders at FLENI, the leading neurological institute in Buenos Aires, Argentina. In 2021, Dr. Millar was appointed to the faculty in the Department of Neurology at NYU Grossman School of Medicine. He is actively involved in clinical care and research on FD.

Dr. Slaugenhaupt, a human geneticist, is Scientific Director of the Mass General Research Institute. Discoveries in the Slaugenhaupt Lab have led to the successful implementation of critical population screening and the development of therapeutics for FD.