Leigh Anne Romer

Hello Friends and Family!

Sweatin' for Sofia and our Great Strides team is back, on Sunday, May 19, 2024 at Trinity Park in Ft. Worth. The Sweatin' for Sofia team will be there supporting our girl for our 17th Great Strides, joining her for this event and every day in our 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 provided reason for Fia 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 Fia was 3 months old. Since then we've raised over $75,000 here and in Canada. It's been a scary, amazing, challenging, never dull 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 Fia and others continue to fight. The fight is real and Fia has faced new challenges this year. There are newer 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 humbling and inspiring to watch hundreds of people at work to end this disease. There's still so much more work to be done.

Each day our brave girl takes almost 40 pills and does 3 different breathing treatments. That means each year she swallows almost 15,000 pills and completes almost 1100 breathing treatments. She also does two 20 minutes sessions of airway clearance daily which is about 1200 minutes each month. In January 2020, she 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, her body, mainly her liver, continue to tolerate this powerful medicine and her numbers in ALL areas have improved. It isn't easy to work through the CF world and we have our challenges too.  Her life may not look like the life of a typical 17 year old, and the challenges of being 17 and having CF are real. Each day she chooses to live her life, plan her future, and she works hard to keep CF in its place as just one of things about her.

Fia is a suddenly a senior this year and will graduate a year early and move into her next chapter. She has taken 4 AP classes and a college math class. We are proud to say she will graduate as a member of the National Honor Society this year.  She is kind, funny, friendly, driven, a bit sassy, a best friend and co-gamer to Patch, and the most amazing daughter we could hope for.  It's been a emotional year for her, filled with ups and downs, and we're all navigating what growing up looks like and feels like.  Her dreams are big, her actions are big, and we're so excited to know that the future is bright for her and others with CF.

Please join us at the walk, with a donation, or both as we sweat for Sofia and show her that this battle is not hers alone. 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,

The Romer Family

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!