JOIN US VIRTUALLY ON SUNDAY, MAY 17TH FOR GREAT STRIDES
This is a crazy time. COVID 19 has changed our lives in so many ways. Some of us have lost loved ones. Many of us have seen our loved ones suffer and, thankfully, recover. I have been frightened for my uncle who goes to work in a hospital in Queens every day and for the many healthcare professionals; nurses, doctors, respiratory therapists, mental health providers who I am lucky to call friends. We have had to leave our home in NYC because the risk of having an underlying pulmonary condition was too great to be in such a communal environment in a city ravaged with coronavirus. Social distancing is something I and others with CF are very familar with. It is how we live on a healthy day in relation to others with CF. We live on Zoom because we would never be able to see or talk to each other because of infection control guidelines and we need to stay away from anyone who is feeling ill. I wouldn't wish this on anyone.
To be honest, I forgot to send anything out about Great Strides, which has moved to a virtual event in light of social distancing. It feels wrong to ask for donations to anything that doesn't help families who are lacking essentials. However, since some friends have asked, I put this together. I do want to share some great news. I started taking the groundbreaking CFTR modulator Trikafta. In 5 short weeks, I have already seen benefits that I am amazed by. I now spend a good deal of time taking slow deep breaths and feeling my lungs fill in a way I can't remember having felt. My nose burns from taking in more air than usual. When I breathe out, I can feel its force on my arms. Judah has noticed it, too! I have been taking hour long walks and could keep going without getting tired. I get tired of seeing the same houses over and over...:)
If you want to contribute, the link ishttp://fightcf.cff.org/goto/melissashiffman
You can also contribute to https://www.foodbanknyc.org/covid-19/
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.