Madeline's Marchers

Our Great Strides Story

Madeline's health has been very steady. We are thankful for the great care that she continues to receive at Johns Hopkins, and for Trifakta, a cf modulator that helps correct some of the underlying defects of CF. This drug has enabled her to maintain good lung function and stay hospital free. Recently she was able to modify her treatments due to continued good lung function. Her work never ends though: she still takes countless pills when she eats, balances her treatments with afterschool activities, and takes extra precautions to avoid getting sick.

Mom and Dad (Sandy’s parents) continue to serve for the second year on the board of directors for the Cystic Fibrosis Foundation's (CFF's) Virginia Chapter. We will all be walking as a family in the Charlottesville Great Strides walk this May 4th. We would love to have you join us for the walk or donate to the team. 

The CFF provides funding for CF families in need and medical research. The research they funded has resulted in medications like Trikafta that have been beneficial for Madeline's continued lung function. Recently, a study was done on CF patients like Madeline who are taking Trikafta (also known as ELX/TEZ/IVA); it found that this drug has significantly extended life span, reduced hospitalizations, and allowed CF patients to live healthier lives. Money donated by you and others that support the CFF has enabled Madeline to have access to this and other lifesaving drugs.

If you've already donated to the CFF recently - thank you! If not, (or if you would like to donate more!) please consider donating to the Great Strides campaign. We appreciate your support!

Madeline, Sandy, Jack, and Audrey