Message from Ann Slaw, President, FD NOW

I am the mom of a child with FD and, for over a decade, both my husband Ken and I have been extremely active in the FD community. We founded FD NOW to support the critical work of Dr. Berish Rubin and Dr. Sylvia Anderson at the Laboratory for Familial Dysautonomia Research at Fordham University. These two researchers discovered the FD mutation in record time followed by four treatment breakthroughs with more on the horizon.

Our 18-year-old son, Andrew, was diagnosed with FD at age 4. He was our first child, and despite feeding difficulties, frequent hospitalizations and inability to cry tears, Andrew's pediatrician assured us that our fears were unfounded. It wasn't until Andrew smashed his finger in a door and he registered no pain that he was ultimately diagnosed by a pediatric neurologist in Chicago.

Andrew's FD diagnosis was both comforting and petrifying. On the one hand, we had an answer; the laundry list of FD symptoms described Andrew to a tee. On the other hand, we faced a terrifying reality; the prognosis was not good. The literature described FD as "life-threatening" or "fatal." Most sources said that Andrew would be lucky to live until early adulthood.

Immediately, Ken and I began a crusade to raise public awareness about FD and to raise money for FD research; we've been campaigning for 14 years, and thanks to Drs. Rubin and Anderson, we continue to gain momentum. 

Andrew is a walking example of this momentum. Though he comes in a small 5-foot, 85-pound package, his personality is larger than life. As a senior in a public high school of 4,300 students, Andrew attends regular education classes, earning A's and B's. His haven is any bookstore.  His current goal is to go to college, and become a comedian and cartoonist. 

FD NOW was so named to underscore our founding principle - urgency. Children with FD, like Andrew, do not have the luxury of time. Urgency drives our researchers to test and then deliver safe substances that have an immediate positive impact in our children's daily lives; they are dedicated to "lab to life, project to patient" research. Urgency drives our commitment to promptly forward your dollars to Drs. Rubin and Anderson, to ensure swift results. These two researchers are dedicated to improving the daily lives of our kids by making the effects of FD disappear. We eagerly await their next amazing discovery.