New Discovery: Some Autonomic Crises in FD May Be Preventable

Researchers funded by FD Hope recently published some very promising news for FD families whose children suffer the ravages of autonomic crises, which cause intractable cyclical vomiting or retching, dangerously high blood pressure and heart rate. Read more

Managing FD: A Tyramine Avoidance Diet

Some autonomic crises may be preventable by avoiding certain dietary triggers, including a compound called tyramine. FD patients may wish to access the accumulated wisdom of other patient populations, most notably, those who suffer from migraines, and those who take a class of antidepressant drugs known as MAO inhibitors, or MAOIs.  People on MAOIs are always warned by their doctors to avoid tyramine because it can cause hypertensive crises, which have symptoms that are very familiar to the autonomic crises experienced by those with FD: elevated blood pressure and heart rate, excessive sweating, and vomiting. Similarly, some migraine sufferers experience autonomic crises very similar to FD crises (in addition to head pain and visual auras) when they eat certain foods.

Click here for more information including  a list of foods that contain high levels of tyramine

Hope for a Cure: The Research of Dr Gil Ast

The Science of FD Research: A Review of Current Research,

Successes and Goals

In January 2001, the discovery of the two mutations which cause Familial Dysautonomia (FD) rocked the scientific community. Research in the field of FD moved quickly and a scant two years after the identification of the mutations, treatment options aimed at the actual disease rather than its symptoms became available for children with FD for the first time. Read more

Green Tea and Brown Rice: Nutritional Supplements Continue to Bring Hope and Transform Lives

In dozens of FD families around the world, the progression of this degenerative neurological disease has been slowed and much of the suffering alleviated. It's the result of an approach to disease called genetic nutritioneering, in which genetic expression is modified by nutrients. Read more

Steps Toward a Cure: FD Research at Tel Aviv University

In January, 2001, the two mutations that cause FD were identified. These mutations cause part of the gene to skip, resulting in a shortened form of IKAP protein. Understanding how the mutation causes the skipping is necessary for figuring out how to get cells to ignore the skip; figuring out how to successfully turn off the mutation will bring about the cure to FD. Such was the goal of Dr. Gil Ast, FD Hope-funded researcher at Tel Aviv University in Israel, who in April, 2004 published two articles describing in part how the FD mutation causes its effect. Read more

New Hope for Familial Dysautonomia

Researchers at Fordham University's Laboratory for Familial Dysautonomia Research reported that a variant of Vitamin E, tocotrienols, improves FD gene function. For some families, tocotrienols have been nothing short of a miracle. 

Read more  Click here for a summary of Dr. Rubin's presentation