Building healthy lives

and happy futures.

Our Leadership



Lanie Etkind -- Executive Director


Albulena Prelvukaj -- Manager of Fundraising and Communications 


Julia Winer -- Development Operations Associate


Officers & Directors+

Faye Ginsburg*


Vice Presidents
Ed Baranoff ***
Jeffrey Goldberger **
Steven Kietz **

Laurent Landau *
Lisa Newman *
Paul Wexler**


Steven S. Fass *


Allan Cohen ***


Gerald Adler *

Daniel Landau***
Gregg Meyers *

Rebecca Sernovitz

Jennifer Sonenshein **

Brian E. Stillman***
Howard Weiser ***

Scientific Advisory Board

Adrian Gilbert, PhD

Frances Lefcort, PhD

Montana State University



Felicia Axelrod, MD 
New York University 


Bat el Bar Aluma, MD, PhD

Sheba Medical Center, Israel


Alejandra Gonzalez-Duarte, MD, PhD
Dysautonomia Center at NYU Langone Health


Alex Gileles-Hillel, MD

Hadassah Hebrew University Medical Center


Horacio Kaufmann, MD

New York University School of Medicine


Adrian Krainer, PhD

Cold Spring Harbor Laboratory


Ralph Laufer, PhD

Lysogene, France


Adam Sachs, MSE


Eric Schon, PhD 
Columbia University


Susan Slaugenhaupt, PhD

Massachusetts General Hospital
Gail E. Sonenshein, PhD
Tufts University School of Medicine

Dysautonomia Foundation Chapters



United Kingdom

+All board members are independent voting members.

*Term expires 2022

**Term expires 2023

***Term expires 2021

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©2022 Familial Dysautonomia Foundation, Inc.
| Disclaimer | Privacy Policy | Medical Disclosure
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Website Disclaimer
The information provided in the Dysautonomia Foundation web site is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, or your child, or someone you know, suffer from the conditions described herein, please see your health care provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.

The Foundation provides linked sites only for the convenience of the visitor. The Foundation does not control nor does it warrant the accuracy of any information provided by these linked sites. Individually identifiable user information is not collected through this site unless voluntarily submitted to the Foundation by the user. Linked sites may have different privacy policies. Any User information submitted directly to the Foundation will not be shared with other parties without the express written consent of the User.

Privacy Policy
The Familial Dysautonomia Foundation will not share or sell any personal information (name, address, email address, phone numbers) that you submit through this website or offline with any third party organization without your explicit consent.

If you conduct a transaction on our website for the purpose of a charitable contribution, we will not record or store any of your credit card information on our servers or in our records. All credit card transactions are conducted through secure web pages.

If you make an online contribution to one of our events or fundraisers, we may ask your permission to list your name and/or the amount of your contribution and/or the name of the organization you represent (if applicable) as a sponsor of the event or as a contributor to the event. We will not list any of your personal information without your consent.

Medical Disclosure
The FD Foundation does not offer medical advice. We always recommend that you contact the Dysautonomia Center (link here) or your personal physician.