In the U.S. there are around 30,000 people living with cystic fibrosis – a rare genetic disease that causes the body to make thick, sticky mucus, which builds up in the lungs, the digestive system, and other parts of the body. This causes persistent lung infections and limits the ability to breathe over time. Our little guy, JD, is one of those 30,000 fighting CF.
John Dawson “JD” Williams was born January 5, 2017. Fortunately, JDs CF diagnosis came 24 weeks into the pregnancy, which meant his amazing CF team at Cook Children’s Dodson Specialty Clinics was able to be put in place before he was born.
JD is now three years old and for the most part, has been incredibly healthy! It has been over 2 years since he was last admitted to the hospital and we are so fortunate and thankful for another year of great health! He coughs a lot, but continuously has had excellent reports from Clinic: X-rays have always come back clean, lungs have sounded clear, he hasn’t cultured anything too bad, and overall has had a fairly clean slate! He does chest physiotherapy (CPT) every day to break up the mucus in his lungs. He is pancreas insufficient, which means he has to take enzymes before he eats to help him breakdown fats and proteins, and absorb nutrients. When he is sick, or his cough is particularly rough, the daily routine changes: we increase CPT by doing it multiple times a day, do inhaled breathing treatments 1-3 times per day, and add antibiotics and/or steroids when needed. When healthy, JD goes to the Cystic Fibrosis Clinic at Cook Children’s hospital for treatment and testing every three months.
He is a typical toddler who is full of life and learning new things every day! JD loves sports, riding his bike and scooter, all things outer space, and most of all - playing outside! CF does not, and never will, define JD. He is a tough and determined little guy, and we know he has a LONG life ahead of him and will do great things!
When JD was first diagnosed with cystic fibrosis, the median life expectancy was only in the 30s. Today, the median predicted age is in the 40s! That is still far too young. JD, along with the other 30K Americans fighting CF, deserve to live much longer than that.
Because CF is considered an “orphan disease” – affecting fewer than 200K people nationwide – there is very little federal funding available for the development of drugs for treatment or curing this disease. This means that nearly EVERY cystic fibrosis drug available today was made possible by the Cystic Fibrosis Foundation. Fundraising is CRUCIAL to treat CF and to move toward finding a cure for this terrible, life-shortening disease.
Though there is currently no cure for CF, the pipeline of new drugs and treatments is incredibly hopeful. On October 21, 2019, the FDA approved elexacaftor/ivacaftor/tezacaftor (Trikafta™) for people with CF 12 years and older who have at least one F508del mutation. The approval of the triple-combination modulator represents a truly transformational milestone in the fight against CF. With the approval of Trikafta more than 90 percent of people with CF could eventually have a highly effective therapy for the underlying cause of their disease. Trikafta targets the defective CFTR protein - it helps the protein made by the CFTR gene mutation function more effectively. This is not a cure, but it is a BIG step forward. We are OVERJOYED by this advancement and EXCITED for the future! None of this would be possible without the love and support of so many people who donate to the CF Foundation through fundraisers like Great Strides!
Please help us keep up the momentum of life-saving CF research and drug development so that someday soon CF will stand for Cure Found!
On September 23, 2020 we are leading "Team JD" in the Great Strides walk event at Panther Island in Fort Worth to raise money and awareness for the Cystic Fibrosis Foundation. Please consider joining us at the walk and/or donating to Team JD.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to 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 not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, 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. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.