Sofia Romer

Hello Friends and Family,

Our Sweatin' for Sofia Great Strides team is back for our 17th year. Please join me and my team on Sunday, May 19, 2024 in Ft. Worth. The Sweatin' for Sofia team will be there supporting the hard work of the Cystic Fibrosis Foundation, and I would love if you would join me for this event and pray for me in my battle against Cystic Fibrosis. Our goal is to raise $5000 this year to support the ground-breaking research that is happening in recent years and provides reason for me and other CFers to hope than ever that a cure is on the horizon.

We first joined the Great Strides Team in support of the CFF in 2007 when I was 3 months old. Since then we've raised over $75,000 here and in Canada. It's been an amazing, challenging, exciting experience learning to be the parents of a child with a life-shortening genetic disease and we are so thankful for the generosity of our friends and family. We continue because me and others continue to fight. There are new medicines available, newer medicines in labs and trial stages, and scientists working furiously to find the cure to CF. In the summer of 2019, we were even able to visit Vertex, one of the leading research companies in the fight to see first hand what progress looks like. It was really cool and inspiring to watch hundreds of people at work to end this disease. We're not done until CF stands for Cure Found. 

Each day I take almost 40 pills and do 3 different breathing treatments. That means each year I swallow almost 15,000 pills and completes almost 1100 breathing treatments. I also do two 20 minutes sessions of airway clearance daily which is about 1200 minutes each month. In January 2020, I started Trikafta, one of the life-changing medicines that came to be because of the work of the CFF and researchers and with the help of people like you and me. Fortunately, my body, mainly my liver, continue to tolerate this powerful medicine and my numbers in ALL areas have improved. I have faces from other challenges this year and it's a lot of work to keep keep myself healthy. In some ways my life may not look like the life of a typical 17 year old, however, I live my life the best I can, keeping CF in its place. It's just one of things about me.

I am a senior this year (graduating early!) and I have had to work through the struggles that come with working, taking many upper level classes, normal teen stuff, and figuring out my future. I are proud to say I am graduating with National Honor Society recognition this year. I don't know yet what the future holds but I am loving reading and writing and psychology. I try to be the best person I can be for myself, my brother, my family, and my friends. This summer I am continuing my own swim lessons business. Let me know if you'd like lessons! My dreams are big and I'm relieved to know that the future is bright for me and others with CF because we continue to fight.

Please join us at the walk, with a donation, or both as we sweat for Sofia and fight this battle with us. Each of us has our own page or you can donate to the Sweatin' for Sofia page. All of it goes back to the CFF to support the work of the foundation and the companies they trust in partnership. Thank you for your thoughts, your prayers, and your support.

Love and thanks,

Fia

Information About CF

There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day just to breathe. I walk for them. Will you join me and support my fundraising goal?

Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. We will not leave anyone behind.

Please support us!

We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!