A lot has happened since our last Great Strides Walk. Isabelle is now an 8th grader and will be heading to high school next year. Covid has made things difficult and she is missing her friends and her "normal" life. The silver lining of this pandemic is that Isabelle has had a very healthy year physically. Social distancing and mask wearing have kept the lung bugs away and she has barely had a cold. For that we are grateful. To stay healthy she continues to do her vest and take approximately 20 pills a day.
Once again we are trying to raise money for the Cystic Fibrosis Foundation in an effort to support their work on patient care and treatment developments. In the last five years four drugs have been FDA approved that help the defective genes that cause CF to work properly. This was no easy task as it took nearly twenty years and $80 million dollars. Isabelle has been fortunate to be on one of these meds and it has made an enormous difference in her ability to gain weight which positively impacts lung function. While these drugs have helped they are not a cure.
The life expectancy of a CF patient is still only 40 years old and many patients won't make it to 30. In the last three months three kids under 20 have died from CF. Isabelle is now 14 and she is smart, sassy, funny, and kind. I simply can't stand the thought of losing her to this disease. Please become a part of Belle's Bettalion by joining our team or making a dontaion. No pledge is too small.
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.