It's that time of the year again! Show some love and support for our team, Rally for Rowan, and the Cystic Fibrosis Foundation as we get ready for the nationwide CF Great Strides Walk for a Cure.

Rowan had an incredible 2024. Lots of adventures, including starting kindergarten, making new friends, beach days, park days, spending time with family, and creating just about everything imaginable with Legos, which continues to be his favorite pastime. He is tolerating Trikafta very well, and his lab results are consistently within the normal range.  He had no surgeries nor hospitalizations this past year.  We are grateful!  For those who may not be familiar…Trikafta is a triple-combination modulator drug that works to correct the defective CFTR protein (responsible for CF) and is proven to help preserve lung function, slow progression, prevent irreversible damage, and improve quality of life. It is the only modulator treatment that Rowan is eligible for, so having access to this drug is a really big deal for him and our family.  

Michael and I recently had the honor to attend the South Carolina Cystic Fibrosis annual meeting.  We received an update on yet another breakthrough drug, Alyftrek, similar to Trikafta but available to a much broader population. Early results indicate it is more effective than Trikafta in some areas.  We are expecting Rowan to start Alyftrek in the near future. The foundation also announced ongoing clinical trials for genetic therapy, which is a step closer to a cure. What an encouraging update!  We left the meeting with a profound sense of gratitude for this organization and their commitment to the CF community.  

Rowan continues to do his part to maintain his health, completing nebulizer and vest treatments daily, plus taking his daily meds. The CF Foundation continues to do its part by funding research and drug development through partnership and advocacy.  Please join us as we do our part…support our team Rally for Rowan as we bring awareness and raise funds to forward the effort to find a cure for Rowan and everyone living with Cystic Fibrosis.

We are excited to participate in the 2025 Great Strides CF Walk scheduled for May 17th at Wannamaker Park in Charleston, SC. We invite family and friends to join us and team Rally for Rowan. Follow the link to Rowan's page and join our team. A donation is not required to walk with us in May, but if you feel motivated to donate, any amount is greatly appreciated.