FD Day 2022

Sunday, June 12, 2022 | 11am - 2pm EDT


About the
Event

The FD Foundation and the Dysautonomia Center at NYU Langone are pleased to host the 37th annual FD Day, on Sunday, June 12, 2022 from 11AM to 2PM EDT.

On this special day we will provide the latest updates on clinical care and scientific research from key members of the Dysautonomia Center team and leading scientists studying FD.

You can also look forward to re-connecting (virtually, of course) with friends from the FD community worldwide.

Meet
Our Speakers

(Additional speakers coming soon)

Kaia Dalamo, DNP, FNP-BC

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

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.

Adrian Gilbert, PhD

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.

Faye Ginsburg, PhD

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.

Alejandra Gonzalez-Duarte, MD

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.

Horacio Kaufmann, MD

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, MSN, FNP-BC

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.

Frances Lefcort, PhD

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.

Carlos Mendoza, MD

Bio Coming Soon

Patricio Millar, MD

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.

Sue Slaugenhaupt, PhD

Bio Coming Soon

Thanks to our
FD Day Sponsors

SUPPORTER

Faye Ginsburg and Fred Myers

Howard and Tova Weiser



FRIEND

Town Total Compounding Center

Daniel, Deena & Rafi Landau


Program
Agenda

Program in formation; please check back for updates
(All times approximate)

  11:00AM (EDT)

Welcome

"I’m/We’re Watching From" Videos

speakerFaye Ginsburg, PhDPresident, FD Foundation
speakerLanie EtkindExecutive Director, FD Foundation

Greetings from our international chapters:

  • Familial Dysautonomia United Kingdom
  • Israeli Familial Dysautonomia Organization
  • Montreal Chapter of Dysautonomia
  11:20AM (EDT)

Clinical Update

Clinical Q&A

speakerHoracio Kaufmann, MDDirector, NYU Dysautonomia Center
speakerAlejandra Gonzalez-Duarte, MDClinical Associate Professor, NYU Dysautonomia Center
speakerPatricio Millar, MDResearch Instructor, NYU Dysautonomia Center
speakerZenith Khan, FNP-BC, MSN, RNFamily Nurse Practitioner, NYU Langone Health
speakerCarlos Mendoza, MDBascom Palmer Eye Institute, University of Miami
  12:25PM (EDT)

Dystinguished Awards

FD Art Contest

  12:45PM (EDT)

Research Update

speakerAdrian Gilbert, PhDCo-Chair, Scientific Advisory Board
speakerFrances Leftcort, PhDCo-Chair, Scientific Advisory Board
speakerSue Slaugenhaupt, PhDScientific Director, Mass General ResearchInstitute
  1:50PM (EDT)

Closing Remarks

speakerLanie EtkindExecutive Director, FD Foundation
  2:00PM (EDT)

Virtual After Party

  • For adults and teens
  • Fun & Games including Jeopardy! Trivia and more
  2:00PM (EDT)

Virtual Schmooze

  • For parents, panelists and others
  • Reconnect with old friends and make some new ones
  • **Choose English or Hebrew-speaking chat groups**