Assemblyman Harvey Weisenberg (D-Long Beach) recently wrote a letter to Assembly Speaker Sheldon Silver requesting $100,000 in Assembly funds to support the Dysautomia Foundation. Familial Dysautomia (FD), also known as Riley-Day Syndrome, is a debilitating genetic disorder that primarily affects Jews of Eastern European descent. The Dysautomia Foundation is the world leader in FD research and treatment.
“FD imposes a daily struggle for those affected,” Assemblyman Weisenberg said. “I remain committed to making sure the Dysautomia Foundation has the money it needs to provide people with FD treatments and move them closer to a cure.”
Caused by a genetically inherited mutation, FD affects one out of every 27 Ashkenazic Jews. People affected have a variety of physical symptoms, including frequent vomiting crises, difficulty with perception of heat, pain and taste, as well as unstable blood pressure and gastrointestinal dysmotility.
In recent years, the Dysautomia Foundation has made large strides in combating the illness. Due to its research, the FD gene was identified in 2001. A carrier test was developed and the research is being used to pursue genetic therapies. The Dysautomia Foundation also has a new FD drug in development for clinical trials.
Those affected by FD require frequent hospitalizations, major surgeries and daily medical and supportive therapies; however, treatment options have improved because of the Dysautomia Foundation. It set up the world’s only two FD treatment centers, and one is housed at New York University. With proper treatment, 50 percent of those affected now live past the age of 40, Weisenberg noted.
“The Dysautomia Foundation is the pioneer in treating this serious genetic disorder. It has been working hard for those affected by FD for nearly 60 years and needs additional support,” Assemblyman Weisenberg concluded.