To say that 2020 was “unusual” would be an understatement. It was a year aptly described by Charles Dickens in his opening in The Tale of Two Cities: “It was the best of times; “It was the best of times, it was the worst of times, … it was the age of wisdom, it was the age of foolishness …”
The “worst of times” culprit was the COVID-19 pandemic; more specifically, the health and safety protocols implemented to mitigate the spread of the virus. The primary components of the protocols (masking, personal distancing, sanitizing and avoiding large groups) were familiar to the CF community. That said, the increased isolation of the population at large aggravated the separation regularly experienced by people living with CF.
The Cystic Fibrosis Foundation set an early example by cancelling group activities and converting its outreach to virtual platforms. Most significantly, their flagship program, the North American Cystic Fibrosis Conference, was live-streamed and the archived videos were made available to the public. On a smaller scale, the Western New York CFF chapter conducted their social gatherings on-line.
CFFC was also affected. We cancelled our annual Education Day event as a safety precaution for our scheduled speakers as well as the potential attendees. We are in the process of re-imagining the program for a return in 2021. We also hope to put our Living with CF Golf Tournament back on the calendar for 2021.
The lead “best of times” story was the expanded access to Trikafta, the game changing CFTR modulator developed by Vertex. We shared stories relating the new life Trikafta users are experiencing. While Trikafta does not work for everyone, we also shared reports of research into additional CFTR modulators and other approaches intended to bring similar relief to the rest of the CF population.
CFFC continued our Hospital Help Packet and Clinic Baggie programs but at slower pace as a result of the COVID-related changes at URMC (aided by the benefits of Trikafta). The “special” environment of 2020 inspired two new efforts. With the help of a couple of sewing volunteers, we distributed 46 face masks to 11 families in April. We also brightened up the holidays for 15 families with the delivery of wreaths (14) and one poinsettia.
These stories, and more, were shared with the community on a (mostly) daily basis through the CFFC Facebook page. It’s hard to believe that we have been using Facebook to disseminate a wide range of relevant information for five years. In case you want to travel down memory lane, we have added a CFFC Facebook Page segment to the Information Resources section in this web site.