Donate to Samantha Ginsburg Myers Fund

A condition most people

have never heard of.

About Familial Dysautonomia (FD)

FD is a genetic disorder that affects the autonomic and sensory nervous systems. Though FD affects people across the world, it occurs almost exclusively in children with Ashkenazi Jewish heritage.  FD is the one of the rarest of diseases, with only 350 people currently living with FD worldwide.

FD is inherited in an autosomal recessive manner, when both otherwise healthy parents pass on their copy of a mutated IKAP gene to their unborn child.

Infants are born unable to sense information coming from inside their own bodies. All the normal bodily functions we take for granted are gone awry in people with FD.

Perhaps the most striking symptoms of FD are reduced sensitivity to pain and temperature, and the inability to produce tears, which is the inspiration for the teardrop in the Familial Dysautonomia Foundation’s logo.

 

Features of FD:

  • Insensitivity to pain
  • Unstable blood pressure and body temperature
  • “Autonomic crises:” Episodes of cyclical vomiting accompanied by extremely high blood pressure and increased heart rate, sweating and fever.
  • Absence of tears
  • Poor growth
  • Other respiratory, cardiovascular, orthopedic, digestive, and vision problems.
  • Inability to suck or swallow (many individuals affected by FD must use feeding tubes to receive proper nutrition).

Living with FD is a daily challenge filled with unimaginable obstacles for those who are affected as well as their families.

 

View our photo gallery to meet some of our brave friends living with FD. 

 

Connect with Us

©2022 Familial Dysautonomia Foundation, Inc.
| Disclaimer | Privacy Policy | Medical Disclosure
Photos by Rick Guidotti, POSITIVE EXPOSURE EIN 13-6145280

315 W 39th St, Suite 701, New York, NY 10018


212.279.1066


Email Us

Let's Connect

four star

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.

Privacy Policy
The Familial Dysautonomia Foundation will not share or sell any personal information (name, address, email address, phone numbers) that you submit through this website or offline 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.

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.

Medical Disclosure
The FD Foundation does not offer medical advice. We always recommend that you contact the Dysautonomia Center (link here) or your personal physician.