This is our 18th year participating in Great Strides!
Chase continues to thrive since starting Trikafta. His PFTs are consistently at 109% and he continues to grow without supplements. I just want to take a minute to share what your donations and the development of Trikafta mean to us.
Chase goes to CF clinic every 3 months (and has since birth). They check his lung function, swab to check for bacteria in his lungs, listen to his lungs and do the typical checkup, check his weight and height and monitor his BMI. A typical visit lasts 2-3 hours because he has to see the nurse, his doctor, the respiratory therapist, and occasionally his pharmacist, social worker, counselor, and dietician as they rotate visits. Clinic days used to be stressful. Not only due to the length of the visit, but there was always the fear when they took him for PFTs...would the number be "high" enough, would the doctor think his function slipped too much? The constant worry was always there. We've had several visits that we thought we were just going in for clinic and based on the PFTs or lung issues the doctor would end up admitting him straight to the hospital. That's hard to digest when you think you're going for a 3 hour appointment only to find out you don't get to go home but have to spend weeks in the hospital. Placing PICC lines, starting the IV medications, it's all very stressful. There have been tears and frustrations over the years but Chase generally handled it like a champ.
Since starting Trikafta the "fear" of clinic is gone. There is no stress involved anymore. I can't tell you what this means for Chase, not only physically but for his mental health as well. With Trikafta he's thriving and feels good all the time. No more baseline cough, no more fear of PFTs not being good enough, no more fear of unforeseen hospital stays! Clinic visits are just check ins now and it's amazing!
Your donations and support over the past 18 years have made all this possible, but we aren't done yet.
While the good news is that the life expectancy for people with CF who qualify and can take Trikafta is basically the same as the general population, that doesn't mean that life is easy for him yet. Trikafta has been a miracle for him, he's not cured. He still takes between 35-40 pills per day, does his vest twice a day for 30 minutes each time, as well as inhale his medicine with a nebulizer.
We won't stop until a cure is found for everyone with CF. Will you please consider donating again this year in support of Chase and all those living with CF?
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day just to breathe. I walk for them. Will you join me and support my fundraising goal?
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 striding until all those with cystic fibrosis have a cure. We will not leave anyone behind.
Please support me!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!
We walk in Great Strides for them.
Will you join us?
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF.
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, 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.