Sue Fader

Madeline's CF Journey 2023

Our granddaughter was born in 2019  and was diagnosed with Cystic Fibrosis a few weeks later. The first year was very difficult with hospital stays, many doctor appointments and what seemed like constant treatments and so many pills. 

Since Madeline's birth the CF Foundation has fostered the development of more than a dozen treatments and helped add years of life for people with CF.  The research has increased Madeline's life expectancy by decades. Money donated to the CF Foundation has helped accomplish this!

Below is a letter written by my daughter:

​Hello Friends and Family,
It's hard to believe that Madeline is now 14 year olds old! We can't believe how fast time flies. She is finishing up her 8th grade year this June and recently was accepted into the music program at our county's Performing Arts high school. She auditioned for both all county and all district band for percussion and mallets and had the pleasure of participating in both. We are so excited for her to continue her love for music next year. She has learned to be the master of all trades in the percussion section. Often she is playing mallets, snare, marimbas, mallets, cymbals, timpani or a combination of many at concerts and band competitions.

Madeline's health has been very steady. We are thankful for the great care that she continues to get at Johns Hopkins. 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, manages her treatments between afterschool activites and school, and takes extra precautions to avoid getting sick.
Mom and Dad have joined the board of directors for the Cystic Fibrosis Foundation's (CFF's) Virginia Chapter, and will be walking with other board members in the Charlottesville Great Strides walk this May. The CFF provides funding for CF familes in need and mediical research. The research they funded has resulted in medications like Trikafta that have been beneficial for Madeline's continued lung fuction. 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 life saving 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 their Great Strides campaign at the link below.

We appreciate your support! Thank you!

Sandy and Jack Long

Charlottesville: Sue Fader - Great Strides - Cystic Fibrosis Foundation

You can support me!

By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.