It’s so odd. Just yesterday, it dawned on me that Graham really hasn’t seen Ethan THIS sick before. He really hasn’t heard his brother cough on a significant basis like he used to. “CYSTIC FIBROSIS” is not a major word in his vocabulary. He hasn’t seen what CF can do enough to ask any major questions. He knows that Ethan does treatments, can’t do certain things, uses a vest for therapy...but he’s never seen THIS side of CF. And I don’t think it’s a coincidence...Ethan started Orkambi the day Graham got home from Riley, then switched to Trikafta 2 years ago...(which was just in time...because I could tell Orkambi wasn’t sustaining his health like it was the first couple of years).
These meds are why Graham hasn’t seen the Ethan that we remember...(9 years ago in the hospital, PFT's in the 60's, oxygen in the 70-80's).
We wouldn’t be here...to this place I have prayed for since December 11, 2003...if it weren’t for those medications. And we wouldn’t have those medications without research. And no research without the people that put so much time and money into The CF Foundation. SO...THANK YOU to those who have been with us, year after year. 17 years now!!! Wow!
WE ARE NOT DONE. And he is not cured. We still have a lot of work to do. He still fights for his health every day. And we STILL NEED YOU!!!!"
Please support me!
Your participation will help us get one step closer to ending this terrible disease. Let’s make CF stand for Cure Found.
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.