Hi friends and family!
Our foundation nationally has Great Strides walks all over the country. The national staff participates in the Great Strides walk here in Bethesda. For me the Cystic Fibrosis Foundation is not just my employment. Working for CFF I am helping with others to find a cure for Cystic Fibrosis for my husband and others with CF. My husband Aaron was diagnosed when he was 6 weeks old. He is now 36 years old. Growing up he was told he would never make it past his 5th birthday.
Aaron is now on Trikfta and is living a normal life. This drug is to help with the underlying cause of CF. Not a cure however can help extend the life of a CF patient. This drug will only help patients who have at least one copy of the F508del mutation or one of 177 other approved mutations. There 1,800+ gene mutations of Cystic Fibrosis. We have ways to go. This is where we need help from our friends, family and community. I hope you and your family are able to help our cause that is dear to my heart.
For our special story: https://youtu.be/gFraFafzZt8