What #break40 Means to Patients Living with Cystic Fibrosis
One of the objectives of the Cystic Fibrosis Foundation is to #break40, allowing those living with CF to live a long, fulfilling life.
Photo: 11alive.com
2-year-old James Alexander Cargal is a bubbly and energetic little boy who enjoys singing, dancing, and playing with his dogs. But he is also a fighter. James was diagnosed with cystic fibrosis at just three weeks old. CF is a genetic disease that mostly affects the lungs, triggering persistent lung infections and limiting the ability to breathe over time. The little boy also has pancreatic insufficiency, a condition in which the body is unable to absorb the necessary nutrients it needs to grow and thrive. As a result, he needs to take pancreatic enzymes before every snack and meal.
James also needs to undergo nebulizer treatments to open his lungs, and high frequency chest wall oscillation. This type of therapy involves a vest with an attached air compressor that works by vibrating at a high frequency. The vest vibrates the chest to loosen and thin mucus. On average, treatment time for this sweet little man lasts a total of two hours a day, that is, when he is healthy. “It is our hope that one day CF will stand for Cure Found, and we will be able to watch James thrive well into adulthood” said Alexia Cargal, James’s mother. Sadly, the average life expectancy of an individual with CF is 40.
Now, one of the objectives of the Cystic Fibrosis Foundation is to #break40. “Support and dedication fuel the Cystic Fibrosis Foundation to relentlessly pursue our goal of finding a cure for Cystic Fibrosis, which impacts more than 30,000 children and adult in the U.S. Kids like James remind us that living with a chronic and life-threatening disease affects his life every day. It is our duty to fight the good fight with them, and redefine their futures in both quality and quantity of life” said Scot Rittenbaum, Executive Director of the Cystic Fibrosis Foundation – Georgia Chapter.
On November 1st of 2018, a fundraiser called the “Battle for a Cure” will be hosted by the 2018 Class of the Peachtree Society. The fundraiser will take place at The Foundry at Puritan Mill in Atlanta and it will bring together the state’s top restaurants for a culinary battle. Each chef will prepare a tasty menu reflecting their own personal flair and compete for the top spot. There will also be live entertainment and of course, tons of food and beverages.
James is one of the patients who will benefit from “Battle for a Cure”. His family and friends are dedicated to spreading awareness about CF and finding a cure. “We want to be able to watch James experience high school, college, his first love – all the things he should be able to experience like every other child” said Derrick Cargas, James’s father.
Harnessing the power of a shared vision
To date, nearly every CF drug available has been made thanks to the Cystic Fibrosis Foundation’s tremendous progress in innovative research and drug development. The Foundation continuously strives to promote high-quality, individualized care, as well as to improve the quality of life for individuals with CF.
Going on 30 years now, Great Strides is the Cystic Fibrosis Foundation’s largest national fundraising event. Each year, over 125,000 individuals participate in over 450 walks across the nation in honor of the Foundation’s mission to cure CF and to raise awareness about this life-threatening disease. Great Strives provides a wonderful opportunity for moms, dads, brothers, sisters, sons, daughters, friends, and co-workers to come together and make a difference.
This year, Team James Alexander marched in Atlanta and in Miami, bringing donations and research one step closer to helping those fighting CF to live longer and healthier lives.
As of this year, several research milestones have been reached, including:
- The approval of tezacaftor/ivacaftor – The FDA approved tezacaftor/ivacaftor for individuals with two copies of the cystic fibrosis mutation, F508del, as well as for individuals who have a single copy of 1 of 26 specified mutations - despite their other mutation. This approval has paved the way for new, more effective triple-combination therapies.
- The approval of lumacaftor/ivacaftor – The FDA approved lumacaftor / ivacaftor for children ages 2-5 with CF who have two copies of the F508del mutation. The approval has prompted the eligibility of the drug for an additional 1,300 children in the United States. This, in turn, brings the total number of those benefiting from the treatment to around 12,300.
- The approval of ivacaftor - The FDA approved ivacaftor for children ages 1-2 with CF who have at least one mutation that responds to ivacaftor.
The Cystic Fibrosis Foundation maintains a long line of potential therapies that intend to target CF from every angle. The more drugs approved down the road, the greater the odds of creating successful therapies and a cure for all individuals with CF.
“The time is now. Together, we can cross the finish line”
Although the Cystic Fibrosis Foundation has come a long way, there is still so much to do. For all those who wish to get involved, taking action on behalf of the CF community only takes a matter of seconds and can be done by:
Advocating to inspire action and to help shape public policy.
Ensuring the voice of the CF community by having an active say in programs and initiatives.
Driving improvements by giving to the Foundation’s annual fund, becoming a corporate supporter, donating property, making a donation or sponsoring a participant.
Looking back over the years, CF used to be something that was greatly feared and now it is thought of more in terms of a chronic illness, rather than a fatal disease. It is a very different perspective, whose transformation would not have been made possible with significant advancements in CF research, drug development, and care. And these advancements would not have been made possible without the extraordinary generosity of the Cystic Fibrosis Foundation’s major supporters and donors. All those who set out to honor, remember, or celebrate a loved one with CF leave behind a lasting legacy. They help to #break40 by adding tomorrows today.
References:
http://fightcf.cff.org/site/PageServer?pagename=gs_why_we_stride
http://fightcf.cff.org/site/TR/GreatStrides/40_Georgia_Atlanta?team_id=69347&pg=team&fr_id=6649
