Most of you are probably aware of the incredible changes I have seen on Trikafta over the last 2 years. My lung functions have increased 17 percentage points, I have gained about 20 pounds, and I went for 8 hospitalizations the year before I started Trikafta to 0 since I started! It has given me a completely different life then I have ever had before. But Trikafta is not a cure. I still face limitations due to damage. Despite being managed, I still have CF and it can still cause problems. I only have 50% lung functions, and difficulty gaining/maintaining weight. I don’t have a normal energy level, and still put a good bit of time every day into maintaining my health. Additionally, Trikafta is not helpful for everyone. Trikafta only treats some mutations, there are many many other mutations that Trikafta doesn’t help. Some people do not see the level of improvement that I have seen on Trikafta, and still others cannot take it because of side effects, or allergies to the medication. Without the CF foundation, and everyone who donates, Trikafta would not exist. The Foundation is still fighting to cure CF for everyone and develop better treatments for antibiotic resistant infections, repair lung damage, and treat many other complications of CF. Trikafta is proof of the amazing improvements that are possible when dedicated researches get the funding that they need to make lives better. If you are able, please consider helping me to ensure that the research is well funded and can continue to push CF care into the future to save lives and improve the quality of life of everyone with CF.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. 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 minimize the risk of COVID-19 infection, 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.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
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.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
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 test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.