I started my CF fundraising campaign back in February before COVID took over. Then life for everyone turned upside down and our annual Great Strides walk-a-thon abruptly came to a halt. And yet, children every day are diagnosed with this chronic genetic disease and lives continue to be lost. How ironic is it that CFers were more prepared for this epidemic than the rest of the world because they are accustomed to: staying 6 feet apart from one another due to infection control, wearing masks when going to doctors' appointments, experiencing frequent hospitalizations, being homeschooled during hard times and constantly using hand sanitizers!
Living with cystic fibrosis has been transformative for our family this past November, with the F.D.A.’s early approval of a magical drug called Trifakta. This medicine, which Jessica was so fortunate enough to begin a few days after her 25th birthday, was a dream come true! This triple combination therapy corrects the underlying cause of this disease for 90% of the patients. Miracles DO happen!
However, just this past winter, we lost another beautiful soul to this ravaging disease. Erin was also 25 years old. I met her at last year’s walk-a-thon. By that time, Jessica and Erin had already established a very special kinship! Her health deteriorated over the year. Her fight ended tragically waiting for a lung transplant. Words can’t describe the extreme sorrow we feel for her family.
In memory of Erin, and all of those still fighting for their lives, we are asking you to continue supporting the Cystic Fibrosis Foundation as we move towards the ultimate goal when CF finally stands for CURE FOUND!
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.