Our team is driven by a dream that one day, every person with cystic fibrosis will have the chance to live a long, healthy life. You can help us reach that goal!
Six days after Russell was born, we received the results of the newborn screening that Russell was diagnosed with Cystic Fibrosis, Double Delta F508 mutation.
We quickly learned that Russell is pancreatic insufficient which means he needs to take pancreatic enzymes to help process the fat in his food. Russell was unable to gain weight without the help from his enzymes. At his first couple appointments, Russell was in the 11th percentile for weight. Russell began taking his enzymes with applesauce at 6 days old. He quickly began gaining weight. Fast forward to now, 16 months old, he is in the 93rd percentile! In Russsell’s CF journey, we will always be monitoring weight gain. This is something that can be a challenge for people with CF. We are thrilled with his growth and hope that he continues to maintain a healthy weight. Although his weight is great right now, we will always monitor him for signs of malabsorption.
In addition to needing his enzymes, every day Russell receives manual chest PT, or “Pat Pat” time as he calls it. As Russell gets older, he will need additional lung therapies. When Russell is sick, he has a sick plan. He needs nebulizer treatments 3 times a day with albuterol and a hypertonic saline solution followed by chest PT. These treatments take almost an hour to complete from start to finish. All of these treatments help keep his lungs clear.
Each step of the way, we are learning.We are thankful for his team at Children's Hospital and we are so lucky to live close to the best hospitals in the country! They have kept us informed and have been guiding us along this journey. Research is getting closer to finding the answer. By understanding how the protein is made, scientists have been able to develop treatments that target the protein and restore its function.
The CFF gets no federal funding and the research is funded by your donations! We appreciate your support to help Russell have a brighter future and as well as other children and people with Cystic Fibrosis!
Our Great Strides Story
Join our team to help make a difference in the lives of all people living with CF. To become a member, click the "Join this team" button. From there, you can donate and start fundraising.
As a member of our team, you are joining a growing community of people committed to finding a cure for cystic fibrosis. Together, we can make CF stand for Cure Found.
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Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
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