Dear Family and Friends,
King, now 8 years old, will join Ginger, Alex, Emma Virginia, Papa (Ed), and Nonie (Sue) for the Great Strides event on April 26, 2020 in Chattanooga. He is most excited to walk with his friends! This school year he enjoyed playing soccer and basketball, hiking, and collecting Pokémon cards. He is an excellent student and loves school. He typically greets each day singing a happy tune (sometimes as early as 5 a.m.)
King requires 2 hours of respiratory therapy each day. He takes 55 pills per day. He receives a 10-hour nightly feeding and a daily bolus feeding at school through his g-tube. King will have another sinus surgery in March. Otherwise, he has had a remarkably healthy school year, in part, due to the care of a pulmonologist, an ENT, a GI specialist, a respiratory therapist, a mental health coordinator, and a dietician.
Last year’s BUZZ has become a reality! In October 2019 the U.S. Food and Drug Administration (FDA) approved Trikafta (elexacaftor/ivacaftor/tezacaftor), the first triple combination therapy available to treat patients with the most common cystic fibrosis mutation. Trikafta is approved for patients 12 years and older with cystic fibrosis who have at least one F508del mutation, as does King, in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, which is estimated to represent 90% of the cystic fibrosis population. A FDA news release states that Trikafta increases FEV (forced expiratory volume), reduces the loss of chloride via the bodies sweat, decreases the number of pulmonary exacerbations/infections, and improves body mass index/growth. Most previous treatments only have slowed the inevitable decline of patients lungs. Trikafta, a game-changer for people with cystic fibrosis, increases the amount of air patients expel from their lungs by an average of 14%. We eagerly await approval of Trikafta for King and other cystic fibrosis patients, who are 12 years and younger. We expect King to have this corrector in his hands within 1-2 years. This corrector will improve his overall health, as stated above, while he and other cystic fibrosis patients await a cure for this devastating disease.
King and others battle sinus and pulmonary infections daily. The Cystic Fibrosis Foundation has recently launched the Infection Research Initiative. The goal is to expand the antibiotic availability to address the chronic and intractable infections that are a hallmark of cystic fibrosis. The overall mission is to improve detection, diagnosis, treatment, and outcomes.
The Cystic Fibrosis Foundation and Vertex, a biopharmaceutical company, collaborated in the discovery and development of precision medications to treat the underlying cause of cystic fibrosis. Without support, such as yours, these technological breakthroughs would not have been possible. The Cystic Fibrosis Foundation is committed to improving the lives of those who suffer from cystic fibrosis while continuing to make CF=Cure Found. Thank you for your resolve and dedication in support of King and all others who fight cystic fibrosis.
Please consider joining Team Kenneth King’s Believers by making a donation to the Cystic Fibrosis Foundation, either by check or online at our link http://fightcf.cff.org/goto/sue-edking. Your gift is 100% tax-deductible; 90% goes to life-saving research. Our personal goal is $10,000. Our family appreciates your prayers and support to sustain King and others with cystic fibrosis until a cure is found. We are stronger together… until it’s done!
Thank you for your donation.