Welcome back for the 4th year of Luca's Gladiators!
We know the last few years have not been easy for anyone, but one thing was for sure, Luca’s Gladiators never stood down and never gave up for our sweet boy!
In late 2019, the CF community had the biggest breakthrough yet with the approval of the three-drug combo drug called Trikafta that has proven to be life-changing for those living with Luca’s mutation of the CF gene. Even people with end-stage lung failure are benefiting from this drug. It truly is a miracle. As of June 2021, they have now approved Trikafta for the 6-11 yr. age range; This is incredible news! News like this could not be made possible without donations like these and the hard work of the Cystic Fibrosis Foundation - West Florida Chapter! While we wait for Luca to be able to take this miracle drug we started his first CF modulator drug back in June of 2020 called Orkambi. He takes his medication twice daily to reduce the chance of him needing intravenous antibiotics and to encourage weight gain. He still struggles with weight gain, but we are hopeful he will turn that around soon. This boy loves steak. He is our little warrior!
Luca is now 3 1/2 years old if you can believe it! He is enjoying school two days a week and loves his new found friends. If you know him at all, you know he is obsessed with dinosaurs. He has created quite the collection and can school you on any dinosaur you ask him about (name, what they eat, etc.). He loves his family more than anything, especially his big sister "Ani-anna". He is such a delight to everyone he meets. He loves to talk and hold conversations with any stranger he comes around. His favorite activities nowadays include playing with dinosaurs (obviously), going to the zoo, going on airplanes, and playing with his friends. He does not let his diagnosis slow him down in the least and still is such a champ when it comes to vest treatments, airway clearance and taking his medicine. We love watching him grow up!
We are very hopeful for an in-person walk again this year being held on April 30th, 2022 to celebrate Luca and our amazing team of Gladiators that support us and this amazing cause!
With your continued support our little team has raised over $31,000 to date!!!
Please consider joining our team as a walker, virtual walker (that’s right you don’t need to be near to be on our team), or donating to one of our many wonderful Gladiators so we can continue to stride towards a cure for cystic fibrosis. Soon we know CF will stand for Cure Found!
Thank you and love to you all! The DePalos and Luca’s Gladiators
Join our team and help us get one step closer to a cure for cystic fibrosis!
For too long, cystic fibrosis, a rare, genetic disease, has robbed people of tomorrows – progressively limiting their ability to breathe and tragically shortening life. There are approximately 30,000 Americans living with CF. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease. 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.
Our beautiful baby boy, Luca was diagnosed with CF when he was just two weeks old. Obviously this is news no parent wants to hear. This was a devastating call for us and it took a very long time to accept this diagnosis. We brought him home as a seemingly healthy baby and soon found out our sweet little boy was very sick. Now, two years later, we are so so grateful to have a thriving, full-of-life, and wild toddler boy. No matter what he goes through on a daily basis you will never catch this boy without a smile.
2019 was an amazing year for CF research with the FDA approving the three drug combo, Trikafta. It is said to be the biggest advancement in modern medicine, BUT it only treats the underlying cause of cystic fibrosis for 90% of the CF community. 90% is amazing and we are fortunate that Luca is one of those that will benefit from Trikafta, but there is still 10% waiting for their miracle. We will not stop striding until we find a cure for 100% of those living with cystic fibrosis. In January 2021, we got amazing news when they announced that Trikafta was accepted by the FDA for the approval process for the 6-11 age range. We should know by June 2021 if it is approved. This is HUGE!
We became involved with Great Strides in 2019 shortly after Luca's diagnosis in August of 2018. Our amazing team of friends and family helped make our team a wonderful success and we were named the Top Rookie Fundraisng team by our chapter for the year. 2020 hit everyone like a ton of bricks, but it didn't stop us from going virtual for the cause and raising a whopping $18,962 for the year! We could not do it without the amazing team of Gladiators we have surrounding Luca. Every dollar is one step closer to a cure for CF!
We can not thank you enough for your continued support to the cause!
For too long, cystic fibrosis, a rare, genetic disease, has robbed people of tomorrows - progressively limiting their ability to breathe and tragically shortening life. There are approximately 30,000 Americans living with CF. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease.
I walk for them. Will you join me and support my Great Strides 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.
By walking with me in Great Strides, you can help accelerate the Foundation's pursuit of new therapies and provide vital support to meet the needs of the CF community.
Your participation will help us get one step closer to ending this terrible disease. Let's make CF stand for Cure Found.
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.