The Dysautonomia Foundation, Inc.
Over 60 years of care, research and advocacy for the FD
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.
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
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
Advocated for ACOG to require doctors
to inform patients of the risk of FD and the need for
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;
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
contribution to the Dysautonomia Foundation will help in the
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
New York State Department of State
Offices of Charities Registration
Albany, NY 12231
Officers & Directors
Steven S. Fass
Scientific Advisory Board
Michael J. Brownstein, MD, PhD
Scientist Emeritus, NIH
Felicia B. Axelrod, MD
New York University
C. Wayne Bardin, MD
Joseph Dancis, MD, Hon.
New York University
Robert Gross, PhD
James Gusella, PhD
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
Gail E. Sonenshein, PhD
Boston University Medical School
Dysautonomia Foundation Chapters
Northern New Jersey
Philadelphia - South New Jersey