From the desk of Faye Ginsburg
President, Familial Dysautonomia Foundation


January 15, 2021
Dear FD Families in New York State and beyond -

I am sure that many of you are as anxious as I am about trying to get an anti-COVID vaccine for your child, and for yourselves as caregivers. Despite the fact that people with FD are at much higher risk than the general population along with many other medically vulnerable groups who have not yet been prioritized for vaccinations in New York State, Governor Cuomo has only authorized expanding vaccine authorization to those who are "immuno-compromised," a category that does not include FD. 

A group of parents has organized a letter writing campaign through the NYS self-direction program. I want to encourage you all to join forces to see if we can get our loved ones with FD (along with other medically fragile people) prioritized to receive vaccinations against COVID. Please feel free to copy from my letter (button below). Given where I live, I wrote to Manhattan Borough President Gale Brewer and our State Senator Brad Hoylman. Both are excellent public servants. If you live outside the city or in another state, information regarding who your representatives are is available online. (I would be happy to help if you are having difficulty.) Of course, you can also write directly to Governor Cuomo or the Governor of your state.

Regarding vaccine safety: I had the chance to talk to our medical team in Israel, where the FD community has been able to get vaccinated. They reassured me that everyone has responded well to the vaccine and that there is nothing to worry about in terms of any particular reactions that they observed. 

Finally, here are some helpful links for vaccine appointment opportunities in NYNJ, and CT.

Hoping you are safe and well in these difficult times,
Faye Ginsburg
President, Dysautonomia Foundation
The Familial Dysautonomia Foundation is a nonprofit organization supporting the best possible medical care and scientific research for the benefit of people afflicted with Familial Dysautonomia. The Foundation also conducts social service and public awareness programs for the benefit of the FD community and for those in the general population who may be at risk for FD.

(212) 279-1066