You may know, Azer has Cystic Fibrosis. This is a genetic disease. It affects how the body makes mucus. The mucus in Azer’s body is very thick, and causes chronic and frequent lung infections. It also causes him to have a hard time digesting fat and protein. He eats high calorie foods to try to compensate for this, but he is unable to eat enough to gain weight, hence the need for the feeding tube. He receives more than 1,200 calories through it a day.
Azer takes about 20 medications a day, and does about 2 hours of breathing treatments a day to keep his lungs clear. We also exercise and jog. Exercise is one of the best ways to keep his lungs healthy, we’ve found.
The life expectancy used to be only in the teens. But now, the average life expectancy is 37 years. The Cystic Fibrosis Foundation works hard creating new medications, and they are working to find a potential cure, too.
We are a team this year, called The Salty Southpaws. If you could donate a dollar or two, we would love it! The funds go directly to the CF Foundation, which goes to research for Cystic Fibrosis.
Azer was born on October the 6th, 2003. He was so perfect. Those tiny feet and hands. He was born with a lot of hair too. He was born in Colorado. In Colorado, included in the newborn screening for diseases, they did the mandatory test for Cystic Fibrosis. We had no idea what Cystic Fibrosis was at the time.
Soon after Azer was born, he started to loose weight. In only a week he had lost a pound or more. He also had a cough. The pediatrician didn't know why. When the results finally came back from the newborn screening, they said he might have CF. So they sent us off to another place to get a sweat chloride test. It turned out to be positive.
Even though we felt devastated, we soon came to learn that the diagnosis of CF is no longer a death sentence thanks to the new therapies and medications available today. The Cystic Fibrosis Foundation is working hard at finding a cure, and also is developing new drugs to help keep improving the quality of life for people like Azer.
Join our team and help us get one step closer to a cure for cystic fibrosis!
For too long, cystic fibrosis, a rare, genetic disease, has robbed people of tomorrows – progressively limiting their ability to breathe and tragically shortening life. There are approximately 30,000 Americans living with CF. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease. We walk in Great Strides for them.
Will you join us?
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF.
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, let’s make CF stand for Cure Found!
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.