Hi friends! It has been such a long time since we have had a Great Strides event! We are joining the St Pete event this year because the Lakeland one has been cancelled for the time being.
Since it has been awhile since our last event, I have lots to tell you about Luke! As you know, he started taking a modulator medication a few years ago and it has really helped him to stay healthy. He has only had one hospital stay for an exacerbation in 4 years and that was probably partially caused by a Covid-19 infection. That is incredible and a testament to what a difference the modulator has been making in his fight against CF. Unfortunately, his weight has started to decline over time and we have not had any luck increasing it with our usual tricks. We decided to switch him to a newer 3 part modulator to see if we have better results. He has only been taking Trikafta for a few months, but we are excited to see that he is doing well on it so far.
The impact of Cystic Fibrosis on Luke’s daily life is still a burden for him. He spends hours wearing his vest and doing inhaled medications. He takes so many medications every day, that we had to buy a bigger pill organizer to keep things straight. He visits his clinic team frequently for labs, X-rays, scans, physical therapy evaluations, dietician meetings, pulmonary function testing, mental health check ups, and doctor visits. He is hooked up to overnight feeds and still tries to eat as many calories as he can the next day. While we are thrilled to know that Trikafta is buying us more time, we still have more work to do. We would love for there to be the kind of cure that means Luke walks out of clinic some day without CF.
This year, you can join as a regular walker or as a virtual walker. Either way, we hope that you will join our team and help us fundraise for a cure.
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.