An Important Message About the Coronavirus
Dear Friends and Family:

In the FD community, we are here to support one another; support that is vital in this constantly changing climate during the COVID-19 outbreak.

Faye Ginsburg, Board President at the FD Foundation, has put a lot of thought into keeping her daughter Sam, age 31, as safe as possible, and we are sharing some of her tips.

  • Cancel personal and professional appointments.
  • Only have contact with immediate family and essential individuals (i.e. medical support staff).
  • If you need to leave the house, walk (or drive) to your destination instead of talking public transportation.
  • If possible, work from home.
  • Wash your hands thoroughly every time you come in and out of your home or touch your face.
  • Wear disposable or lycra gloves when you leave your house. Wash lycra gloves in very hot soapy water every night (they dry quickly).
  • Remove shoes and change into slippers, and change into "home only" clothes upon entering your house or apartment.
  • Use Clorox wipes on every handle, light switch, remote and phone 2x a day.
  • Have groceries are delivered to your home - they can be left in your driveway or the hallway of your apartment. Do not have contact with the delivery people. Wear disposable gloves will using Clorox wipes to clean anything including food items, coming into your home. (If delivery is not an option in your area, call your local store to see if they have implemented hours for those who are older or immune-compromised, or shop before 7:30 AM when there will be fewer people).
  • Be sure you have medicines and medical supplies to cover at least the next month, if not longer.
  • If you need to take an elevator, wear a mask and gloves and try not to get on with other people. If people want to get on with you, the mask can help signal to them that you have reason to be ultra-careful, so it's easier to say "Can you please wait until the next elevator" or "Go ahead, I'll get on the next one."
  • Observe social distancing (6 feet apart) - no handshakes, kisses, hugs, etc.
  • Greet people like Spock.
The plus side:
  • Technology allows us to stay connected. Sam is able to text and video chat friends every day.
  • Use the time to catch up on your reading list, including rereading some of your favorite books. Sam is currently reading the Twilight series!

We want to hear how you're staying safe! Go to to share your tips with the FD community.
A longtime friend of the Dysautonomia Center, Dr. Stuart Ditchek, recently recorded and shared a video on how to stay safe during the pandemic. Click on the link below to watch his video for additional tips.
The Familial Dysautonomia Foundation does not provide medical advice, so please contact the NYU Dysautonomia Center or your personal physician if you have any questions or concerns.

Wishing you good health!
-FD Foundation Team
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