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The Dysautonomia Foundation, Inc.
Over 60 years of care, research and advocacy for the FD community


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.

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 (Federal tax ID 13-6145280) that has established the world’s only FD treatment centers. As a result of the work of these centers, quality of life, average life expectancy and survival 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 for FD research and treatment (at NYU School of Medicine)

  • Established the world's only FD clinical research lab

  • Largest source of funding for FD research and treatment (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 treatment and research 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 Tel Hashomer Sheba Hospital in Tel Aviv;

  • Sponsoring and operating social services projects

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 in Israel

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

 

 


Officers & Directors

President:

Faye Ginsburg

Executive Director:
David Brenner

Vice Presidents
Ed Baranoff
Jeffrey Goldberger
Laurent Landau
Steven Kietz
Lisa Newman
Paul Wexler

Secretary
Steven S. Fass

Treasurer
Allan Cohen

Directors
Joshua Goldberg
Jennifer Sonenshein
Barbra Waldfogel
Howard Weiser
Keith Zauder

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

Dysautonomia Foundation Chapters

California
Chicago
Montreal
Northern New Jersey
Philadelphia - South New Jersey
South Florida
Toronto
Israel


 
 


 
 
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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.

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Privacy Policy

The Dysautonomia Foundation will not share any personal information (Name, address, email address) that you submit through this website 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 via Verisign, Inc., a leader in secure online credit card and payment processing.

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.

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The Dysautonomia Foundation is a registered 501(c)3 non-profit organization. Federal ID 13-6145280

Contributions are tax deductible to the extent permitted by law.
 
Dysautonomia Foundation, Inc.
315 W 39th St, Suite 701, New York, NY 10018 212-279-1066
(c) 2013 Dysautonomia Foundation, Inc. The FD logo is a registered trademark of the Dysautonomia Foundation, Inc.  
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