Frequently Asked Questions

What is FD?  
FD is an abbreviation for Familial Dysautonomia, a rare, fatal, genetic, neurologic, disease present at birth.

What is it like to have FD? 
Kids with FD live in very unstable bodies.  All their internal functions are unpredictable. They are prone to wide swings in blood pressure and heart rate, rapid decline of oxygenation and life-threatening autonomic crisis.

What is an "autonomic crisis?" 
When the autonomic nervous system of a child with FD becomes overwhelmed due to infection, fever, even eating the wrong foods, they rapidly deteriorate into an "autonomic storm" of uncontrollable retching, life threatening high blood pressure and elevated heart rates.  These crises can last for hours, days, weeks or even months and often requires intensive care hospitalization.

What is FD NOW? 
Ann and Ken Slaw and other FD families and friends founded FD NOW, a 501c3, to raise funds to support research that will drive better treatments and cures for patients with FD in two years or less.

Has there been any progress to help kids with FD? 
Yes. Progress has already been made in the Laboratory for Familial Dysautonomia Research at Fordham University by Drs. Berish Rubin and Sylvia Anderson, who discovered three natural compounds that help stabilize the nervous system.  They have also created a nutritional regimen that eliminates foods that trigger crisis.  With additional funds, these researchers are positioned to accelerate the next breakthrough in two years or less!  

Is FD preventable? 
Yes! Today, there is a simple blood test to determine if you are a carrier.

What keeps us energized? 
Celebrating the unwavering spirit of those dealing with FD and remembering the lives lost to this devastating disease.