Melissa Alleman

Ana's Great Strides Story

At only 6 days old Ana was diagnosed with Cystic Fibrosis, a very rare life shortening, progressive, genetic disease that affects her lungs, pancreas, and other organs. Only around 40,000 people in the United States have been diagnosed with Cystic Fibrosis. Before the defective gene was discovered, many children did not have the advantage of the treatments that Ana now has access, and many passed away during infancy or prior to stating school related to complications related to Cystic Fibrosis. The National Institutes of Health reports that in 1954, the life expectancy was only 4-5 years of age.  Through the advancements of science and medicine, a disease that very rarely allowed one to progress into adulthood, now has a median life expectancy into the 50’s and increasing. When Ana was born in 2018, at that time the median life expectancy was mid 30’s, according to the Cystic Fibrosis Foundation, based on the 2022 Registry data, those who were born with the disease between 2018 and 2022 are now predicted to be a median age of 56 years.

Ana has been very fortunate with her health these past nearly 6 years, however that can quickly change. Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.