Dysautonomia Foundation - About the Foundation

Dysautonomia Foundation, Inc.
A non-profit organization supporting medical research
and treatment for people with Familial Dysautonomia

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

Major Accomplishments

Established the world’s only treatment centers dedicated exclusively to FD
Endowed the world’s only professorship that focuses on FD research and treatment
Largest source of funding for FD research (more than government, private industry, or 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 need for genetic testing.

Major Initiatives

Funding 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;
Sponsoring 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 at Hadassah Hospital in Israel

The Dysautonomia Foundation is 501c3 nonprofit organization.

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Click here to read about our history and statistics.

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

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
Maryland . Randallstown . Maryland
Michigan . Southfield . Michigan
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 2006

Chairperson
Michael J. Brownstein, MD, PhD
J. Craig Venter Institute

Felicia B. Axelrod, MD
New York University

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

Peter N. Ray, PhD
University of Toronto

Adele Schneider, MD
Albert Einstein Medical Center (PA)

Eric Schon, Ph.D.
Columbia University

Gail E. Sonenshein, PhD
Boston University Medical School

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President, Board of Directors: Eddie Baranoff
Executive Director: David Brenner
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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 West 39th Street, Suite 701
New York, NY 10018
Phone: 212-279-1066
Email: info@familialdysautonomia.org