Ethan was diagnosed with CF at three weeks old. We were shocked and terrified, BUT we finally had an answer for why our tiny newborn had been losing so much weight and was constantly hungry! After he began treatment he went from the 9th percentile to the 80th percentile with the help of treatments, medication, and an amazing care team. Ethan is growing and THRIVING!
Ethan is now a VERY busy 3 year old who loves cars, cars, and more cars, anythingred, singing his ABC's, beginning to read, counting, taking things apart to see how they work, feeding his hummingbirds, cleaning the house with mommy, building things with daddy, and playing with his kitties. Somehow he still has time in his busy day to fit in all his treatments! We usually start each day with the vest and misty-mist (aka his percussion therapy vest and the nebulizer) before breakfast. His second session is usually before dinner (a less-full stomach is better!)
Like so many families, we are patiently waiting for the groundbreaking drug Trikafta to be approved for Ethan's age range. Hopefully sometime before the end of the year!!!
Please join our team, make a donation for Ethan, and help us get one step closer to a cure for cystic fibrosis - a rare, genetic, life-shortening disease that makes it difficult to breathe.
Every dollar makes a difference!! It goes to directly to the CF Foundation's research that provides groundbreaking medication (modulators like Trikafta), new treatments, and studies (like gene therapy!) that could soon result in a cure for Ethan and thousands of others like him!
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.