There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day just to breathe. We walk for them. Will you join us? To become a member of our team, just click on the "Join our Team" button. From there you can make a donation and start your fundraising.
By becoming a member and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Addison was born on June 15, 2016. Shortly after being born, Addison started showing signs of abdominal pain that progressively worsened the next day. After demonstrating signs of abdominal distress, she was transported to the NICU Unit at Willis-Knighton Hospital in Shreveport. She underwent emergency abdominal surgery at only two days old. Much to our relief, the surgery successfully removed the bowel blockage that was causing her distress. However, her surgeon explained that Addison had suffered from Meconium Ileus, a bowel blockage most commonly associated with Cystic Fibrosis.
From the first time we head those two little words- Cystic Fibrosis- our lives were changed forever. Although we were overcome with relief that Addison had successfully survived the surgery and was recovering well, we were terrified of what the future may hold. Against my better judgement, I began to research and educate myself abut this disease, all the while hoping and praying that my fears would be unfounded.
We were able to take Addison home after only two weeks in the NICU. It was an incredibly joyful day and I was so relieved that our little family was finally under the same roof. However, it did not take long for my fears and concerns to creep back in, as Addison continued to show severe abdominal discomfort after every meal. She was also demonstrating Failure to Thrive- not growing or gaining much weight. I was deep in denial and convinced myself that she had terrible colic.
When Addison was two months old, I took her back to Shreveport for a sweat test- the definitive test for Cystic Fibrosis diagnosis. I prayed to God all the way there and on the way back home for a negative sweat test result. However, only a few hours after her sweat test was conducted, I received a call from the hospital. It was the senior physician at the CF Center at LSU Health in Shreveport calling to tell me her sweat test came back positive for CF. The rest of the night and days that followed are a blur as Nick, myself, and our extended family went through the grieving process. I remember the complete devastation I felt, and couldn't imagine ever feeling better.
Fast forward four years, and I can tell you that the old cliche saying is true: time really does heal wounds. Although we have faced challenges, we have also embraced our "new normal" and incorporated it into our daily lives. Enzymes before meals and snacks, nebulizer treatments, Chest Physical Therapy (CPT), and CF clinic visits have just become part of our routine. Nick and I have learned so much about CF since Addison's diagnosis. CF currently has no cure, but modern medicine, treatments, and research have made it a live-able illness- not the death sentence it once was. The life expectancy for CF patients continues to rise, and the overall quality of life has improved. This gives us hope and comfort as we daily combat Addison's CF.
With all of the medical breakthroughs that have recently occurred, I have to believe that we aren't far away from discovering a cure. It is my deepest desire for Addison to see a cure during her lifetime.
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.