Dysautonomia Foundation, Inc.

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The Dysautonomia Foundation
57 years of care, treatment, research and advocacy for the FD population

The Dysautonomia Foundation is a nonprofit organization supporting the best possible medical care and scientific research for the benefit of people afflicted with FD. The Foundation also conducts social service and public awareness programs for the benefit of the FD community and for those in the general population who may be at risk for FD.

Click here to read "Who we are and what we do," a PDF about the Foundation

The Dysautonomia Foundation was founded in 1951, shortly after the disease was first identified in the United States. The Foundation is a 501(c)3 public charity that funds the world�s only two FD treatment centers. As a result of the work of these centers, quality of life and life expectancy for people with FD has improved significantly.  
 
The Foundation's board of directors is made up primarily of parents of people afflicted with FD. Headquartered in New York City, the foundation funds care for people with FD throughout the world. Most funding is acquired through private donations, but a growing portion of funding is obtained through philanthropic organizations, corporate contributions and governments grants.

Major Accomplishments

  • Established the world�s only treatment centers dedicated exclusively to FD

  • Endowed the world�s only professorships that focuses on FD research and treatment

  • Established the world's only FD clinical research lab

  • Largest source of funding for FD research (more than government, private industry, or any other nonprofit organization)

  • Funded treatment that has increased life expectancy from 5yrs to 40yrs, dramatically reduced morbidity and improved quality of life for FD patients.

  • Funded research that led to understanding of the disease as a neurological condition.

  • Funded research that led to discovery of the FD gene.

  • Funded research that led to general population carrier screening, resulting in a significant reduction in the birthrate of new FD cases.

  • Advocated for government recognition of FD as a developmental disability.

  • Advocated for ACOG to require doctors to inform patients of the risk of FD and the need for genetic testing.
     

 Major Initiatives

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

  • Maintaining the Dysautonomia Center and Dysautonomia Research Lab at New York University Medical Center;

  • Maintaining the Israeli FD Center at Hadassah Hospital in Jerusalem;

  • Sponsoring social services projects

  • In funding research or patient care, the Dysautonomia Foundation does not pay for indirect costs.

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

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

Advocating for the FD Population
The Dysautonomia Foundation works with the medical community and works with the government to further the concerns of people with FD. We work with the medical community to educate doctors about FD, to let them know that they can call on our experts for assistance in treating FD patients, and to encourage medical governing bodies to recognize the need to require doctors to inform patients about the existence and risk of FD (in 2004, due in part to our efforts, the American College of OB-GYNs, ACOG, published an opinion telling doctors to inform Ashkenazi Jewish patients about the risk of FD and the need to get tested for FD). We also advocate on the government level to try to get states to recognize FD as a developmental disability so that FD patients can more easily obtain benefits / assistance for FD treatment, and to require insurance companies to provide coverage for the cost of genetic testing.

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 scientists and researchers at leading hospitals and universities 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

  • In funding research or patient care, the Dysautonomia Foundation does not pay for indirect costs.

The Dysautonomia Foundation is 501c3 nonprofit organization and 509a2 public charity. All donations are tax deducrtible to the extent permitted by law.

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Click here to read a message by the Executive Director of the Dysautonomia Foundation (Fall 2007)

Click here to submit a question to the Foundation

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Chapters

Boston . Greater Boston . Massachusetts
Chicago . Buffalo Grove . Illinois
Dysautonomia Society of Great Britain
Bernie Hattenbach . Norwalk . Connecticut
Long Island . North Woodmere . New York
Montreal . Montreal . Canada
Southern California . Tarzana . California
South Florida . Sunrise . Florida
Toronto . Toronto, Canada
Helen Volein . Northern New Jersey
Worcester County . Worcester, Massachusetts

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Scientific Advisory Board

Chairperson
Michael J. Brownstein, MD, PhD
Scientist Emeritus, NIH
 
Felicia B. Axelrod, MD
New York University
 
C. Wayne Bardin, MD
 Bardin LLC
 
 Joseph Dancis, MD, Hon.
 New York University
 
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
 
 Joseph B. Martin, MD, PhD
 Harvard Medical School
 
 Peter N. Ray, PhD
 University of Toronto
 
Eric Schon, PhD
Columbia University
 
 Gail E. Sonenshein, PhD
 Boston University Medical School
 

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President, Board of Directors: Eddie Baranoff
Executive Director: David Brenner
Board of Directors
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The Dysautonomia Foundation is a 501 (c)3 nonprofit organization. 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

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Dysautonomia Foundation, Inc.
 315 W 39th St, Suite 701, New York, NY 10018    212-279-1066

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