Dear Friends, please join us this year and every year in our fight for a cure for Cystic Fibrosis for our sweet boy, Worth -- and 30,000 more in the US.
It is thanks to YOU and to the CF Foundation that Worth is as healthy and thriving as he is, BUT living with Cystic Fibrosis still means 30 pills a day for Worth, air compression treatments everyday, and the fear that the next cough or cold could have a real damaging affect on his lungs.
Without the fundrasiing and research efforts of the CF Foundation, Worth wouldn't have had access to the first ever groundbreaking genetic drug for people living with CF. Becauce of it -- and your dollars which made it possible(!) -- Worth has never been healthier! In fact, his lung function is at an all-time high!
But even this week we were reminded of how far we still have to go. Worth got a common cold, which quickly become a deep concerning cough, that required antibiotics, a trip to UNC hospital for a culture, a week out of school, and lots of daily treatment.
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. I will not stop until CF means Cure Found and all those with cystic fibrosis have a cure.
Please donate to our Winning for Worth team. And help us raise awareness by sharing it with your friends & family & encouraging others to support our fight for a cure for 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.