About FD

Familial Dysautonomia (FD) is a progressive, degenerative, neurological, fatal genetic disease carried by 1 in 27 persons having Central or Eastern European Jewish ancestry. It is a recessive genetic disease which can appear after generations, and it is as prevalent as Tay Sachs once was. Prospective parents can now be tested to see if they are carriers of FD.

Here is a description of FD, as an eight-year-old child might explain it to you:

“I am an eight-year-old with FD. When I was born, the doctors thought I might die. I have unstable heart rate and blood pressure which can in a moment become extremely high or extremely low, threatening my life. I cannot eat adequately by mouth, so I get my nourishment through a stomach tube. I am very likely to aspirate into my lungs and wind up in the hospital with pneumonia. I am small for my age, with very low muscle tone. I walk and talk a bit differently than other kids, but I am very intelligent. My eyes have no tears, so I must have drops put in them very frequently to avoid abrasions.

FD is a progressive disease, so the longer there is no effective treatment for it, there will be degeneration in my organs and bones. Many of us die in childhood. When I have a crisis, which is fairly often, I am very ill and suffer a lot. So does my whole family.

BUT NOW! I am full of hope for my future, because a very special researcher, Dr. Berish Rubin, the Director of the Laboratory for Familial Dysautonomia Research at Fordham University in New York, has already, in just a few years, made these discoveries:

Identification of the gene that causes FD.
Development of a carrier screening test for prospective parents.
Discovery of two natural compounds that now ease the severity of the symptoms of FD in the children by beginning to grow the missing protein in their neurological systems.

Dr. Rubin and his staff have created the roadmap of testing natural compounds which can continue to alter this disease. They have made great progress toward a cure. Now they need the funds to hire staff to quickly test more compounds. The discovery of these effective compounds will also help fight other diseases, such as certain types of genetically driven cancers, cystic fibrosis, and Fanconi Anemia.

Within the next few years, with enough funds, Dr. Rubin’s research will stop the degeneration of my insides and let me have life beyond these childhood years, so I can be happy, and my parents will not have to suffer along with me anymore.

I want to say thanks to all of you who have donated to help me and all the hundreds of other kids with FD. We all will have hope now, because of your gift of life.”
----An Eight-year-old with FD
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Dear Friends,

Please send us your donation. It will go directly to advance the research that is beginning now to allow these children to enjoy longer life and better health.

Our children really are our future. It is truly a mitzvah to fast-forward this research. By helping these children, we will speak clearly to the human yearning for a deeper purpose to our lives. On behalf of the children with FD, we thank you so much.