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At times, my pediatric CF care team told me about the possible negative outcomes of my cystic fibrosis. Their gentle support helped prepare me for unexpected good health, and is one reason why I was able to qualify for the Boston Marathon.
My son, Keith, was diagnosed with pancreatic cancer after an initial focus on CF as the cause of his health issues. With people with CF living longer, we need more awareness of pancreatic cancer in CF individuals due to the potential increased risk.
My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.
Since my daughter, Kinley’s, cystic fibrosis diagnosis, I have come to rely on her care team. We have become a true team in Kinley’s care.
The Foundation, in collaboration with external community advisors, finalizes recommendations in area of Community to help foster more inclusion and improve the experiences of Black people living with and impacted by cystic fibrosis.
Working as part of a cystic fibrosis care team gives me the opportunity to provide the type of personal care I’m passionate about — I just hope my patients understand how much we are invested in their well-being.
A transformative leader for more than two decades, Marshall will transition to advisory role
Ad hoc patient advocacy coalition provides comments to Pennsylvania’s Insurance Commission to inform decision making regarding the state’s essential health benefits benchmark plan.
The CF Foundation writes to Michigan’s House Committee on Insurance and Financial Services to provide comments on SB 483: The Prescription Drug Cost and Affordability Review Act, which would create a prescription drug affordability board in the state.