As many of you know, my beautiful 7 year old nephew, Jude, battles a chronic and life-threatening genetic disease called Cystic Fibrosis. It’s a devastating and progressive disease that mainly attacks the lungs and digestive tract. Every single day, Jude has to do chest physiotherapy to help clear the mucus in his lungs, and he has to take 45 enzymes a day in order to break down food and allow him to absorb much needed nutrients.
Despite daily diligence with a healthy diet, medications, and physical therapy, Jude’s lung function is declining. His coughing fits have become more frequent and during bad flare-ups, he struggles to breathe clearly. While he looks perfectly healthy on the outside, his body is battling a war inside that he has to fight on a daily basis, with no break, no days off. Jude’s one of my favorite people in the world and it breaks my heart that he has to endure so much.
Historically, children with CF died as infants, and as recently as 1980, the median survival was less than 20 years. However, over the past 3 decades, immense progress has been made and the lifespan of CF patients has risen dramatically; currently the median survival in the United States is 37.5 years. While a lot of progress has been made, it’s not enough; we desperately need a cure. Jude and all CF warriors deserve to live longer, more comfortable lives, and I’ll never give up fighting for that.
On June 1st, Josh, Jackson, and I will be walking to raise money for the Cystic Fibrosis Foundation. They’re an amazing organization truly dedicated to improving the lives of people with CF. Every dollar donated goes directly towards life-saving research and the search for a cure.
It would mean the world to us if you could help in any way you can - whether it's by donating (no amount is too small!), joining our team in Pittsburgh, joining a walk in your area, sharing this link, or simply by spreading knowledge about CF. And if you're not already an organ donor, PLEASE consider becoming one as so many people's lives depend on it.
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.