My journey as a cystic fibrosis advocate began the moment my son, Aiden, was diagnosed with CF through newborn screening in 2017. Aiden was just a few weeks old, and I was suddenly thrust into a world filled with new challenges, medical jargon, and an urgent sense of purpose. Since then, I have proudly teamed up with the Cystic Fibrosis Research Institute (CFRI) to bring awareness to this rare and complex disease, not just for Aiden, but for every individual and family touched by CF. 

Every year, I go to the California State Capitol with CFRI to advocate for increased research funding, improved healthcare access, and critical legislation that supports the CF community. Speaking directly to lawmakers and sharing Aiden’s story has been an incredibly powerful experience. It reminds me that behind every policy decision are real lives, real battles, and real hopes for a better future. 

CFRI has been an essential partner in this mission. For five decades, CFRI has been dedicated to funding innovative research, providing educational and emotional support to individuals with CF and their families, and fostering a strong, connected community. Through its many programs from wellness retreats to mental health initiatives and advocacy training, CFRI works tirelessly to improve the quality of life for those living with CF while pushing for the ultimate goal: a cure. 

I absolutely love advocating with CFRI. Their compassion, commitment, and community spirit are unmatched. Being part of their advocacy efforts has given me a voice, and more importantly, a way to fight for Aiden’s future. Although we have made tremendous progress over the years, including the development of groundbreaking therapies that have transformed lives, we still do not have a cure. 

I will continue to advocate loudly and passionately until the day that cystic fibrosis is no longer a life-shortening disease. Until every child like Aiden can dream fearlessly of the future without the burden of CF. Our community’s strength, and the advances we have already achieved, give me hope that that day is coming. 

Together with CFRI, and with the support of families, friends, and policymakers, we will not stop until CF stands for Cure Found. 

By: Mahsa Praz