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 prepare for the nationwide CF Great Strides walk for a cure.
For the most part, Rowan had an incredible 2023. Lots of adventures, including starting preschool, making new friends, beach days, park days, spending time with extended family in New York and Duck, NC...and creating just about everything imaginable with Legos, which is definitely his favorite pastime. After years of waiting for approval, he started Trikafta in June. 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.
This past year has not come without its share of CF-related challenges. Rowan had two sinus surgeries, one more severe than the other, and it seems likely his sinuses are going to be affected in a major way. He was also hospitalized with gastroparesis, also called delayed gastric emptying, which slows down the digestive system, causing nausea, vomiting, abdominal pain, and decreased appetite. This lasted about five weeks and was definitely the most worrisome experience thus far.
Rowan continues to do his part to maintain his health, completing nebulizer and vest treatments twice daily along with taking numerous medications. The CF Foundation, the world's leader in the search for a cure, 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 2024 Great Strides CF walk scheduled for May 18th 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 on May 18th, but if you feel motivated to donate, any amount is greatly appreciated.
Hope to see you there!
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.