WASHINGTON, D.C. – Congressman Clay Higgins (R-LA) announced today that Bella Reed will be his special guest for President Trump’s first State of the Union address.
Bella is a vibrant 14-year-old from Lafayette, LA who was born with cystic fibrosis, a chronic genetic illness that causes persistent lung infections and limits the ability to breathe. Despite her condition, Bella maintains an active lifestyle and cheers for both her school and a competitive cheer squad. This is made possible through extensive vest and breathing treatments in addition to taking more than 50 pills a day.
Congressman Higgins is working with the National Heart, Lung, and Blood Institute’s (NHLBI) cystic fibrosis division to support critical research efforts and sustained federal funding. These efforts are necessary to advance next-generation treatments and earlier detection of cystic fibrosis.
Congressman Higgins will introduce legislation that supports ongoing research efforts and enhances data-sharing mechanisms to better coordinate care models for pediatric patients as they transition to adult care models.
Congressman Higgins issued the following statement:
“Bella’s fight to overcome cystic fibrosis is a testament to her powerful and moving spirit. I am honored to have her join me for the State of the Union, to share her story with others as we take action to develop new treatments and research that mitigates the effects of cystic fibrosis. I greatly respect and support her amazing family for their loving devotion to Bella and their relentless pursuit of next-generation research, ultimately… by the grace of God…leading to a cure for this horrible disease that attacks our children.”
About Cystic Fibrosis:
Cystic fibrosis is a progressive genetic disease that causes an overproduction of mucus in the lungs, pancreas, and other organs resulting in reoccurring infections and life-threatening organ damage. Due to the multiple genetic defects that can cause cystic fibrosis, patients experience significantly varied symptoms and complications, complicating both treatment courses and research efforts.
In the United States, more than 30,000 Americans live with cystic fibrosis, with nearly 1,000 new cases diagnosed each year. Seventy-five percent of people diagnosed are age 2 or younger, yet those who live past childhood have a life expectancy of just 37 years. Although the predicted median survival rate for cystic fibrosis patients has quadrupled in the last 50 years, the complexity of the disease and general lack of data on adult cystic fibrosis patients has hindered research.