Sue's Page

Chattanooga 2018

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Raised: $10,300.00

Goal: $10,000.00

My Great Strides Story

  • King
  • King and big sister, EV

Dear Family and Friends,

This year we will celebrate the Cystic Fibrosis Foundation’s 30th Anniversary of the Great Strides Walk in Chattanooga on April 29th at Baylor School. This will be our seventh year to walk in support of research vital to finding a cure for King, our six-year old grandson, and all others with cystic fibrosis (CF). CF is a life-threatening genetic disease causing persistent lung infections, progressively limiting the ability to breathe.

King is completing his first year of school in kindergarten. He loves school and is up and at ‘em every morning, eager to see his friends. He loves art and numbers. He plans to “go out” for soccer. His sense of self is positive. In the picture of King and Emma Virginia you can see that he adores her and her kisses!   

King continues to assume a greater role in his care. He is proud that he now can take his nine different medications in pill form. Each day he takes 46 pills. He can control the machine that runs the air-driven, vibrating vest, which loosens the mucus in his lungs. He requires 2 ½ hours of respiratory therapy, daily. He assists in connecting and disconnecting the tube for his nightly feeding. More recently, due to failure to gain weight, King began receiving an additional daily tube feeding (bolus) and more calories were added to the eight-hour nightly tube feeding. These caloric additions have resulted in weight gain.  Despite the medications, daily treatments, and tube feedings, maintainng King's good health is tenuous and requires daily deligence.

Dollars contributed to the Cystic Fibrosis Foundation have, through support of research, helped add decades to the lives of people with CF. Research advances include a drug to thin mucus, making it easier to clear it out of the lungs; three antibiotics; gastrointestinal therapies; importantly, three CFTR (cystic fibrosis transmembrane conductance regulator) modulators, i.e., medications designed to correct the malfunctioning protein produced by the defective cystic fibrosis gene (there are 1800 different mutations to the CF gene) have been improved.  This is groundbreaking science!  The CFTR modulators work to stop devastation to the lungs and make CF patients healthier all around.  Unfortunately, none of the three CFTR modulators now available correct King's mutations (f508del x W1282x).

On the other hand, we are excited about several medications, each in a triple combination, that now are in Phase Two Trials. These medications are designed to address King’s and other similar mutations. Results suggest that one or more of these combinations could be available to King and others within the next three to five years. These correctors cause the protein produced by the defective genes to function more effectively.

Scientific and medical advancements required to sustain people with CF and find a cure are made possible through your donations to the Cystic Fibrosis Foundation. Please consider joining Kenneth King’s Believers today, by making a donation online at our link http://fightcf.cff.org/goto/sue-edking or via a check. Your gift is 100% tax deductible; 90% goes to life-saving research. Our personal goal is $10,000. We ask for your prayers and support that CF no longer stands for cystic fibrosis but Cure Found.


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