Meet Renee! Our daughter, Renee, is an awesome 6 year old who loves music, dancing, glitter, gymnastics, and being outside. She's an amazing big sister! She is very smart and loves school too. Renee was diagnosed with cystic fibrosis as an infant. Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs.
Each day she starts her morning with about an hour of nebulized meds and chest physiotherapy (she wears a vest that inflates and shakes the different lobes of the lungs to loosen up sticky mucus and make it easier to cough out). Every evening, she does the same. When she is sick, she does 3-4 of these treatments.
Renee is currently on a drug called Kalydeco, the first drug targeting the basic genetic defect in CF. In 2019, the fourth drug of this type, Trikafta was approved by the FDA. It will benefit 90% of CF patients. This one is not available to anyone under 12 yrs old, so Renee will have to wait a year or two before being eligible. The arrival of this group of drugs, called CFTR modulators, signals a historic breakthrough in how CF is treated. It's expected that CFTR modulators could add decades of life for some people with CF. Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There is still no cure for this devastating disease.
We are SO thankful for the research that has gone into developing these medications that are helping extend our daughter's life, and give her as normal of a childhood as we can. We need everyone to help the CF Foundation so that their vision of fixing CF for all mutations becomes reality. Your generous gift will be used efficiently and effectively, as nearly 90 cents of every dollar raised is available for investment in programs to support research, care and education. Making a donation is easy and secure. Just click the yellow donate button on the left of this page and it will be credited to our team. Any amount you can donate is greatly appreciated!
Renee can look forward to a fairly normal life and escape the ravages of cystic fibrosis as long as the research continues and treatments make it to market. We thank you in advance for your support and your prayers.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.