Ross Gulla

Sometimes life can get busy and it can feel as though you’re just pushing through to make it to the next weekend, holiday, or vacation. It can feel like survival instead of enjoying the many blessing we have been given. For Sarah Grace and many others with Cystic Fibrosis, life in general may feel like survival from one illness or hospitalization to the next. However, with newer medication (and others in development) “survival” takes on new meaning. 

Sarah Grace has not been hospitalized since she began taking a newer medication for CF (Trikafta) in July 2021. She has even been able to play two sports this spring - volleyball and lacrosse! What a blessing! She still has to take precautions others wouldn’t which keeps her from being a “normal” middle-schooler. Trikafta doesn’t cure her disease but it makes her symptoms more manageable. She still does therapy at least twice daily, sees all of her doctors at least quarterly, takes enzymes with all food, and is pre-diabetic, but we couldn’t be more excited that survival doesn’t necessarily involve frequent hospital stays and procedures!

Children with CF are healthier and now we look toward long term goals: college, career, family, and more! We worry more about making sure she has learned other skills for survival. Sarah Grace has learned how to do her own therapy. She has also searched for recipes and cooked meals for our family. This summer she will spend some time learning other life skills like laundry! 

Even though it has side effects, her lung function would decline more rapidly without Trikafta! We wouldn’t have this ground-breaking drug and treatment plan without the dedicated researchers and generous donors who fund their pivotal work! None of this would be possible without people like you - our friends and family who bless our lives with your love and support! Your donations are changing lives!

Real progress has been made in the search for a cure, but the lives of people with CF are still challenging and limited, and sometimes cut too short. While we have treatment plans to help CF patients live longer, healthier lives, there is still no cure for this devastating disease. Research continues to try to find better drugs with fewer side effects and hopefully one day a true cure! 

By walking at Great Strides, I am helping add tomorrows to the lives of people living with cystic fibrosis. Your support means the world and if you are able, I would be honored if you would make a donation on behalf of my daughter for this year’s Great Strides fundraising campaign for CF.  Thank you for supporting me, Sarah Grace, the mission of the CF Foundation, and Great Strides!