I am the proud grandparent of Palmer & Lucia Santichen (pictured above), 5 year old (almost!) identical twins with one of the rarest forms of Cystic Fibrosis. Upon birth, they were life-flighted to Children's Hospital of Pittsburgh (CHP), a two hour drive from home, where they spent their first 104 days in the NICU. They endured several surgeries and had a few close calls. The girls are underweight but currently doing well.

The girls each take 7 pills before every meal and 4 before a snack. This medication isn't a cure or even therapeutic. It simply allows them to absorb nutrients needed to survive. They also spend 30 minutes 3 times a day completing rigorous airway clearance via a vest and compressor in addition to 2 medications in a nebulizer. Every 2 months, Mom, Dad and the girls travel 90 miles to CHP where Palmer and Lucia meet their CF team of doctors to maintain their health.

In 2025, Palmer was lucky enough to escape their estimated annual 14-day “tune-up” hospital visit.  Lucia was not so lucky. On January 1, 2025, she was taken by ambulance to CHP where a portion of her right lung was removed due the bronchiectasis damage. She ran into complications and ended up spending 9 days in the PICU and 7 days in a regular room. It was a month long recovery and she is thriving now.

In America, approximately 40,000 children and adults have CF. Three thousand of them have rare variants that do not respond to the therapeutic medications that are currently available. Of this 3,000, only 10 others have the same variant as Lucia and Palmer. Money for research, medication, clinical trials and a cure is needed for the 3,000 individuals with rare variants, as well as for all people with cystic fibrosis.

There is currently no cure for CF and I'm walking to help change that reality.

CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.

Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.

Will you help us end cystic fibrosis?

By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward - a cure for everyone with CF.