Dear Family & Friends,
This year, both of our nieces, Audrey age 21, and Olivia age 19, (A&O) have experienced the miracle of the new CF drug, Trikafta. Prayers answered! They are both college students and making the transition to the Adult CF Clinic at John’s Hopkins Hospital. A&O continue to enjoy life with LATITUDE and to prove that they are ready for the exciting adult challenges that lie ahead.
As we celebrate A&O's new daily normal and improved CF health with the new drug, Trikafta, their unique academic milestones and impressive personal accomplishments throughout 2020, we also acknowledge that, like A&O, more than half of the CF population (30,000) is age 18 or older. That’s right, adults with Cystic Fibrosis (CF) now outnumber children with CF.
A&O represent the new “adulting” face of CF.
While ‘they’ say, “nothing prepares you for the responsibility that comes with being an adult,” those with CF are uniquely ready. The daily accomplishment of the mundane but necessary tasks associated with maintaining good CF health is the living definition of “adulting.” Each morning through each night, A&O independently assess and administer all of the self-care required between regular CF Clinic check-ups. From daily breathing treatments to countless medications, proper nutrition and rest, A&O know what to do. We are confident in their ability to continue the 24/7 self-care required as CF adults.
Along with their parents, A&O wish to thank everyone for your love and support. All of the funds raised by Team A&O Latitude for CF research help bring us closer to making CF stand for a “cure found!” Special thanks to the Cystic Fibrosis Foundation’s Maryland Chapter staff for all you do each year, and the dedicated doctors and nurses at John’s Hopkins CF Clinic and hospital. Since 2011, your walk participation and donations have helped provide ongoing research and development for necessary therapies and medications for A&O.
Now we must continue to support cff.org and find the new "Trikafta" for the rest of our CF community!
Aunt Tammy & Uncle Pat Shay ~ AT & UP
Team A&O Latitude