Dysautonomia Foundation, Inc

About the Foundation

The following page offers information about the Dysautonomia Foundation, including our mission and services, chapters, members of the Scientific Advisory Board, and contact information. 

This Page Includes:
Mission and Services
Chapters
Scientific Advisory Board
Contact Us

 

 
 

 
Mission and Services

Dysautonomia Foundation, Inc.
315 west 39th Street, Suite 701 
New York, NY 10018 
(212) 279-1066

President: David Brenner 
Executive Director: Lenore Roseman 
Assistant Executive Director: Maryon Weill

  • Click here to read The Dysautonomia Foundation: What We Do, an article distributed at Dysautonomia Day 2001.

  • Click here to read a Fall 2003 message by the President of the Dysautonomia Foundation. 

  • Click here to submit a question to the Foundation.

The Dysautonomia Foundation, Inc. is a non-profit organization founded in 1951 by the parents of children with FD. The organization is headquartered in New York City with sixteen chapters located throughout the United States, Canada, Great Britain and Israel.

Supporting Clinical Care 
The Dysautonomia Foundation supports clinical medical care for people with FD by:

  • Maintaining the Dysautonomia Treatment and Evaluation Center at New York University Medical Center

  • Maintaining the Israeli FD Center at Hadassah Hospital in Jerusalem

Supporting Scientific Research 
The Dysautonomia Foundation supports research studies into FD and the FD gene.  Basic scientific research regarding FD is currently being supported at a number of prestigious hospitals and universities including:

  • New York University Medical Center, New York 

  • Mt. Sinai Medical Center, New York 

  • University of California, San Diego 

  • ICRF Clare Hall Laboratories, Hertfordshire, UK 

  • Harvard Medical School, Cambridge 

  • Bar-Ilan University in Israel 

  • Hadassah Hospital/Hebrew University

  • Massachusetts General Hospital

  • University of Erlangen-Nuremberg, Germany

  • Danish Cancer Society

  • Rush University, Chicago 

Grant applications are reviewed annually by a prestigious medical advisory board. 

Supplying Informative Material 
The Dysautonomia Foundation provides a continual flow of information to families and other lay and professional persons who request medical, educational, or promotional material concerning FD.

  • Newsletter- published biannually 

  • Periodic bulletins regarding new breakthroughs and care 

  • Brochures and Parent Care Manual 

  • Annual Dysautonomia Day with workshops for families and patients 

  • Bibliography 

  • History, Programs and Accomplishments - Fact Sheet 

  • This Web Site

  • The Familial Dysautonomia Resource Guide 

How You Can Help 
A tax deductible contribution to the Dysautonomia Foundation will help in the following ways:

  • Further research into FD and the FD gene; 

  • Provide grants for eminent scientists and researchers at leading hospitals around the world to study FD; 

  • Maintain the valuable clinical care and research at the Dysautonomia Centers at New York University Medical Center and at Hadassah Hospital in Israel.

 

 
 

 
Chapters 

Boston . Greater Boston . Massachusetts 
Chicago . Northfield . Illinois 
Dysautonomia Society of Great Britain 
Bernie Hattenbach . Norwalk . Connecticut 
Illinois . Niles . Illinois 
Israeli . Herzlia 
Long Island . North Woodmere . New York 
Maryland . Randallstown . Maryland 
Michigan . Southfield . Michigan 
Montreal . Montreal . Canada 
Southern California . Tarzana . California 
South Florida . Sunrise . Florida 
Toronto and Tikvah . Toronto, Canada 
Helen Volein . Northern New Jersey 
Worcester County . Worcester, Massachusetts

 

 
 

 

Scientific Advisory Board 2004

Chairperson 
Michael J. Brownstein, MD, PhD 
National Institutes of Health

Felicia B. Axelrod, MD 
New York University

Joseph Dancis, MD, Hon. 
New York University

Robert Desnick, MD, PhD 
Mount Sinai Medical Center

Robert Gross, PhD 
Dartmouth College

James Gusella, PhD 
Harvard University

Kurt Hirschhorn, MD 
Mount Sinai Medical Center

Michael M. Kaback, MD 
U.of California at San Diego

Edwin H. Kolodny, MD 
New York University

Irwin J. Kopin, MD 
National Institutes of Health

James Lupski, MD, PhD 
Baylor College of Medicine

Peter N. Ray, PhD 
University of Toronto

Conrad M. Riley, MD, Hon. 
University of Colorado

Adele Schneider, MD 
Albert Einstein Medical Center

Eric Schon, Ph.D. 
Columbia University

Gail E. Sonenshein, PhD 
Boston University Medical School

 

 
 

 
Contact Us

Dysautonomia Foundation, Inc.
315 west 39th Street, Suite 701 
New York, NY 10018 

Office: (212) 279-1066
Fax: 212-279-2066

Email: Info@familialdysautonomia.org
Website: http://www.familialdysautonomia.org
Webmaster: fdinfo@videobureau.com
 

 A copy of the last annual report filed with the New York State Board of Social Welfare may be obtained by writing to:

New York State 
Department of State Offices 
of Charities Registration 
Albany, NY 12231

 

 
 

 

 

 copyright (c) 2004 Dysautonomia Foundation, Inc.                                                     last modified 2/19/04