Latest News and Updates on COVID-19

for the FD Community

March 5, 2021 - Vaccinations for Homebound in NYC

New York City is providing in-home Covid-19 vaccinations (Johnson & Johnson) to eligible NYC residents who are fully homebound, have not already been vaccinated, and do not already have access to a vaccination program.

New Yorkers who believe they are eligible for an in-home vaccination can express interest using the form above. The City will use this information to call back to further discuss eligibility for the program.

 

March 5, 2021 - COVID-19 Vaccines: where to find them and what to expect

The FD Foundation is pleased to share the latest update from the medical team at NYU's Dysautonomia Center on COVID-19 and the vaccine. To view the Dysautonomia Center's vaccine guide, including information on what to anticipate when you receive your vaccine, please click on the link above.

 

February 19, 2021 - NPR Lauches COVID-10 Info Site

We are pleased to share a new COVID-19 vaccine resource just launced from NPR. The site, accessible by clicking on the link above, offers information on how to get the COVID-19 vaccine in each state.

 

February 9, 2021 - COVID-19 Vaccine Distribution Phase Update

Great news!! Vaccine distribution opens to those in NY State with comorbidities and underlying health conditions of any age. Click on the link above for more information or go to the the DoH's website for information on the expansion of phase 1b. 

 

January 28, 2021 - Help NY's disability community & sign this petition advocating for the COVID-19 vaccine

We know that everyone wants to get the COVID-19 vaccine as soon as possible. But we all recognize that there are vulnerable populations, including those with intellectual and developmental disabilities (I/DD), that should have access to it before others. We encourage you to take action by signing the petition (link above and host by The ARC) that encourages Governor Cuomo and other elected officials to prioritize vaccine distribution for New York's I/DD community, including people with familial dysautonomia. 

 

After you sign the above petition, we encourage you to use email and/or social media to share it with your family and friends!

 

January 26, 2021 - NORD and Partners Host FDA, CDC Leaders in Webinar Addressing Rare Disease Community on COVID-19 Vaccines

Click on the link above to read the press release from NORD, the National Organization for Rare Disorders and to watch the webinar to hear the recorded conversation.

 

January 26, 2021 - COVID-19 Vaccine and FD Patients

The FD Foundation is pleased to share the latest update from the medical team at NYU's Dysautonomia Center on COVID-19 and the vaccine. To view the latest vaccine update from the Dysautonomia Center, please click on the link above.

 

January 25, 2021 - Biden Pandemic Strategy Puts Focus on People with Disabilities

Click on the link above to read about President Joe Biden's approach to the COVID-19 pandemic, including his attention to the virus' impact on people with disabilities. Click here to read the full report.

 

January 15, 2021 - Letter from Faye Ginsburg, FD Foundation President

A group of parents has organized a letter writing campaign through the NYS self-direction program. Faye Ginsburg, President of the FD Foundation, encourages everyone to join forces to see if we can get our loved ones with FD prioritized to receive vaccinations against COVID-19. For more information and a sample letter, click on the link above.

 

January 5, 2021 - COVID-19 Vaccine Update

As information becomes available about the COVID-19 vaccine, so does the urgency to receive it. The medical team at NYU's Dysautonomia Center is closely monitoring the vaccine situation and will continue to keep us up to date as new information becomes available. To view the latest vaccine update from the Dysautonomia Center, please click on the link above.

 

December 8, 2020 - COVID-19 Vaccine Update

Our community has many questions about the COVID-19 vaccine, timing and how the vaccine may impact our population. The Dysautonomia Center at NYU is closely monitoring the vaccine situation and will continue to keep us up to date as new information becomes available. To view the latest vaccine update from the Dysautonomia Center, please click on the link above.

 

May 21, 2020 - FD, COVID and Stress Management

The Dysautonomia Center at NYU Langone published updated tips for FD patients as the COVID-19 pandemic continues. Check out the link above to learn more about continuing necessary precautions and get the latest information on lung health and stress management.

 

May 13, 2020 - Do Jewish Genetic Diseases Increase the Risk of COVID?

In response to the above article, Dr. Horacio Kaufmann, Director of the Dysautonomia Center at NYU Langone, commented, “Congratulations to the FD community for keeping healthy during this health crisis.  We know that the restrictions haven’t been easy on any of you, but please be assured that they are worth the sacrifice.  Your vigilance in following medical advice has prevented what could have been a potential catastrophe for people with FD.  KEEP DOING WHAT YOU’RE DOING!  We will get through this together!”

 

May 4, 2020 - Pulse Oximeters -- the early detection device

We are pleased to share the following article from the 4/20/2020 issue of the New York Times. Many of you already have a pulse oximeter at home -- check out the article by clicking on the link above to learn a new way it might be useful during the coronavirus pandemic.

 

April 28, 2020 - FD, the Eye and COVID-19

With reports emerging about conjunctivitis (pink eye) being a sign of COVID-19, NYU's Dysautonomia Center interviewed Dr. Carlos Mendoza from Bascom Palmer Eye Institute to get his thoughts on FD, the eye and coronavirus. Click on the link above to watch the interview.

 

April 20, 2020 - Employment and Disability Publication from Cornell University

Many in the FD community participate in various types of benefit and entitlement programs. We recognize that this topic is complicated and the programs can vary by each US state and county. Right now, the Federal government is implementing new legislation that changes the rules for these programs and these changes will remain in place as long as the COVID-19 state of emergency continues. We are providing the attached document from Cornell University’s institute on Employment and Disability as a reference for families.  

 

April 16, 2020 - NORD Financial Assistance Program for individuals affected by COVID-19

Please click on the link above to learn more about a financial assistance program for those affected by COVID-19 launched by our colleagues at NORD (National Organization for Rare Disorders). 

 

April 10, 2020 - Telemedicine at the Center

The COVID-19 outbreak has required our community to adapt to an ever-changing landscape and put a strain on hospital resources. The medical team at NYU's Dysautonomia Center is taking on the challenges of the COVID-19 outbreak, while continuing to take care of the issues our FD patients face on a day-to-day basis. Thanks to advancing technology, the Center's team has been able to alleviate some of those strains through telemedicine practices, also known as virtual appointments. 

 

April 9, 2020 - Join our FD Adult "Virtual Happy Hour"

We are all feeling socially isolated during this pandemic! The FD Foundation is planning a weekly “virtual happy hour,” offering an opportunity for you to get together and hangout online with friends near and far. Click here to get more details and to sign-up for future hangouts: bit.ly/fdsupportgroup

 

March 27, 2020 - Update from NYU's Dysautonomia Center

To be sure you are have most up-to-date information and recommendations pertaining to the current outbreak of COVID-19, please click on the link above to view a recent update prepared by NYU's Dysautonomia Center.

 

March 18, 2020 - Social Distancing Tips

Faye Ginsburg, Board President at the FD Foundation, put a lot of thought into keeping her daughter Sam, age 31, as safe as possible. Click on the link above for some of her tips.

 

March 12, 2020 - Update from NYU's Dysautonomia Center

The NYU Dysautonomia Center provides the FD community with an update on the outbreak of the novel Coronavirus. Click on the link above to learn more, including answers to commonly asked questions.