Building healthy lives

and happy futures

Our Leadership


Staff

Lanie Etkind -- Executive Director 

letkind@famdys.org

 

Julia Winer -- Development Operations Associate

jwiner@famdys.org

 


Board

Albulena Prelvukaj -- Manager of Fundraising & Communications
aprelvukaj@famdys.org 

 

President

Faye Ginsburg *

 

Vice Presidents

 

Secretary

Steven S. Fass *

 

Treasurer

Allan Cohen ***

 

Ed Baranoff ***

 

Jeffrey Goldberger **

 

Laurent Landau *

 

Steven Kietz **

 

Directors 

 

Lisa Newman *

 

Paul Wexler **

 

Jennifer Sonenshein **

 

Howard Weiser ***

 

Rebecca Sernovitz

 

Gregg Meyers *

 

Brian E. Stillman ***

 

Gerald Adler *

 

Daniel Landau ***

 


Scientific Advisory Board

Co-Chair

Frances Lefcort, PhD

Montana State University

 

Co-Chair

Adrian Gilbert, PhD

Neuroderm

 

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

 

Eric Schon, PhD

Columbia University

 

Susan Slaugenhaupt, PhD

Massachusetts General Hospital

 

Gail E. Sonenshein, PhD

Tufts University School of Medicine

 


+All board members are independent voting members.

*Term expires 2022

**Term expires 2023

***Term expires 2021

Connect with Us

©2023 Familial Dysautonomia Foundation, Inc.
| Disclaimer | Privacy Policy | Medical Disclosure

Photos by Rick Guidotti, POSITIVE EXPOSURE EIN 13-6145280

315 W 39th St, Suite 701, New York, NY 10018

212.279.1066

Email Us

 

Let's Connect

        

NORD Platinum member 2023. Candid Platinum Transparency 2023. Charity Navigator. 4 Star Charity.

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.