Sean Squires was diagnosed with cystic fibrosis (CF) at the age of five (most of those individuals who have cystic fibrosis are diagnosed soon after birth).  Cystic fibrosis is a genetic disease (both parents must have a CF gene) that causes the body to produce thick, sticky mucus that blocks airways and damages organs.  Cystic fibrosis is considered an “orphan disease,” which is a rare disease that affects fewer than 200,000 people in the United States.  Orphan diseases are often severe and life-threatening.  The federal government provides little if any, funding to find a cure for “orphan diseases.” 

Raising awareness and fundraising by the Cystic Fibrosis Foundation has made a significant difference in the lives of those suffering from CF.  The Squires family has been fundraising since Sean was diagnosed, and we have raised about $4 million, which has been used to find better drugs, therapies, and the motivation to find a cure.  Sean and many others who have cystic fibrosis have benefited from new medications that have improved their quality of life and extended their life expectancies (when Sean was diagnosed, his life expectancy was 34 years). 

Sean is doing well, living independently, and pursuing his dreams, but he struggles with mental health issues.  Bill and I are very proud of him and will continue to raise awareness and money for those with cystic fibrosis.