Look at the photo of Addy with her healthy baby girl, Eloise. First, for anyone who doesn't know: cystic fibrosis (CF) is an inherited disease that a child will have only if BOTH parents carry the faulty gene. Even when Greg and I were both unknowingly CF carriers, each pregnancy had only a 1 in 4 chance of producing a child with CF (which occurred with Addy and Ava). Each pregnancy also had a 1 in 4 chance the child would not even be a carrier, and a 1 in 2 chance the child would be a carrier without having the disease (Owen). Because Addy has CF, it did not mean Eloise would automatically have it; her father, Logan, would also have had to be a carrier-he is not. To be clear: Eloise does not have CF. I included the photo because Eloise's birth is part of the blessing I want to share with everyone who has joined us in working so hard to make CF stand for "Cure Found."

When Addy's CF diagnosis was confirmed in 2003, so many questions followed. CF came with a lower life expectancy.

Dreams of her future flashed before me, and I wondered what would be possible. One of those dreams was whether she would be able to have children. In 2026, the answer was a joyful YES-miracles abound.

If you have followed our journey from the start, you know how grateful we are to the parents who founded the CF Foundation in 1955. At the time, few wanted to fund research for this orphan disease. Those founding parents created a foundation whose work led to rapid, life-changing progress, including:

1961: Established an accredited care center network.

1989: Foundation-funded scientists discovered the gene that causes CF.

1993: Foundation-funded research led to FDA approval of the first CF-specific drug, Pulmozyme (Addy began this at diagnosis at age 2; Ava started at birth).

2012: FDA approved Kalydeco, the first drug to treat the underlying cause of CF, developed through the Foundation's venture philanthropy model.

2015: FDA approved Orkambi for patients 12 and older with two copies of the most common CF mutation, F508del, affecting about one-third of U.S. CF patients. (Addy and Ava have this mutation. Addy participated in these trials; Ava was too young. The age requirement was later dropped and Ava began treatment in 2016.)

2019: FDA approved Trikafta, a highly effective drug that targets the underlying cause of CF. (Addy and Ava began Trikafta and over the following year were able to decrease or eliminate many daily medicines used to control CF symptoms. They no longer needed chest therapy twice daily. Doctor visits declined from every 5-6 weeks to 2-3 times a year. Trikafta significantly improved health, increased life expectancy, and enhanced fertility for many people with CF.)

In the midst of our great joy this season, the difficult times we've endured with CF can fade from view. We must remember the fight is still very real-especially for people with rare mutations that Trikafta cannot help. We do not yet have a cure for everyone. I was reminded of this at a recent fundraiser when a physician-friend expressed concern about the present generation of patients: things are hopeful, but how will advocacy continue if urgency and visible desperation lessen? Her question stayed with me all night. I realized I had grown a little complacent. These are good times for my girls, and asking for money feels hard. But at the end of the evening, I met Mr. and Mrs. Ives, whose daughter-three years older than Addy-had CF and died at 18. She had been a strong supporter and advocate for the CF Foundation; she was in college and had many plans. When her parents asked if my daughters were healthy, I felt the weight of my answer: yes-Addy just had a baby, and Ava is enjoying college. With tears, they congratulated me, and I acknowledged their loss and reminded myself that the fight is not over. I cannot and will not stop until CF stands for Cure Found. The Foundation is using donations responsibly and making tremendous progress. We must keep that progress moving forward. Will you help?

Our annual walk is the Sunday after Mother's Day. This year it is Sunday, May 17, at 2:00 PM at Lions Park in West Liberty. Please join us in raising awareness and resources to find a cure.