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!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To help minimize the risk of COVID-19, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Please be advised certain localities and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you are feeling ill or have been recently exposed to COVID-19.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.