A little about Alexandra: She will soon finish 8th grade. She is very independent with her daily therapies and medications (consisting of about 35 pills each day, twice daily chest physical therapy to help clear her lungs, and an inhaled medication via nebulizer each morning). She continues with her positive attitude towards this disease. Does not mean she likes it. But she doesn’t dwell on it. She gets it. Knows what she has to do and just does it. She remains active in sports (field hockey, basketball, and softball). We have no doubt that her year round involvement in these sports and exercise has been, and will continue to be, key to her health. She is seen quarterly at the CF Clinic at Johns Hopkins where we anxiously await each time to hear how her lung function is (she had a drop in September, but rebounded within a couple months and has maintained since). She recently made the decision to participate in a research study for CF that focused on the effects of exercise for those with CF. This required a couple extra hours to her Hopkins visits as well as some add on visits. It was neat to see her make her own informed decision to participate after learning about the study. This last year has seen a lot of progress in the treatment of CF with the approval of a new drug by the FDA, Orkambi, which she started last July. While this drug does not cure CF, it is the first to actually enable the mutated cell to function properly. Without support like yours this drug would not have been developed.
Great Strides is a fun, family-friendly event. There are vendors with free giveaways, free food, live music, and more. We can't express enough what this walk means to her. This walk, that short afternoon, is by far her favorite day of the year. She so looks forward to it each year and seeing all of her team in our Alexandra's Assembly shirts out there supporting her. Please consider joining our team by clicking the "join my team" button to the right. Or just show up!
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.