Our team is driven by a dream that one day, every person with cystic fibrosis will have the chance to live a long, healthy life. You can help us reach that goal!
Our Great Strides Story
Parker is an active toddler fighting everyday to beat the odds of Cystic Fibrosis! He loves being outdoors riding his bike, playing at the beach or swimming!
He was born April 29, 2020 and at three days old was rushed into emergency surgery for Meconium Ileus or MI for short which he received an Ileostomy bag. He fought for his life in the NICU for weeks getting stronger each day proving from the start he would not let CF stop him. Then June 26, 2020 he had his reversal surgery and spent some time in the PICU for his recovery. Since then, Parker has had more than a handful of hospitalization in the past few years.
Parker takes medication each day that helps his body function. The list is long but it’s what is body needs to help him.
If you want to know what it’s like for someone with CF to breathe, take a straw and try breathing through it while plugging your nose.
The ocean has been proven to be a wonderful natural medicine for people with Cystic Fibrosis! With CF the “salt channels” don’t work properly. People with CF have sticky mucus. Imagine stepping on gum! That’s kind of how the mucus is with someone with Cystic Fibrosis
We are thankful Parker absolutely loves the beach! Any chance we have we try and get him on the beach and in the ocean to get that mucus flowing! .
We are currently waiting to add another medication to that list called Trikafta!
Trikafta, is approved for 6 and up and is changing the lives of many adults and older children with CF but we are still waiting for it to be approved for the 2-5 year old category.
Trikafta is not available for everyone one with CF though due to needing a certain CF mutation to qualify.
We are blessed Parker has the mutations that will make him eligible when the time comes.
However Trikafta and some other amazing CF drugs are NOT a cure and sometimes CFers might have to stop taking them if they are not working with their bodies properly.
We will continue to be hopeful that Trikafta will benefit Parker though and continue to fight for a Cure!
Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. They are moms, dads, sisters, brothers, daughters, sons, and friends who face the sobering prospect of a shortened lifespan. I walk for them.
Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.
You can support us!
By supporting our fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.
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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.
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