As you know, my sweet Ivy girl has CF. We are BEYOND grateful for advances made in CF care in the past 10 years. I’m so hopeful for Ivy’s future. As any parent with a medically complex child we have extra daily steps to take to keep her healthy and a couple precautions to take as well. We’re looking forward to starting modulators soon that we’re thankful she’s eligible for based on her mutations but we would also be lying if the side effects didn’t scare us some as well. We believe the benefits out weigh the risk so when the time comes we will start them to hopefully prevent progressive lung damage. We have been BLESSED with this community and we know 100% that CF has never looked brighter for the majority of CF patients BUT imagine being the 7-9% not eligible or one of the patients with side effects where you cannot take this one great drug. We continue to fight for Ivy and for all of those without an acceptable answer for how they need to move forward. We continue to raise awareness and fundraise to find answers and provide support that they are not alone. I have never expected the village that I have been blessed with but I am so thankful for each one of you.
My Great Strides Story
Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. They are moms, dads, sisters, brothers, daughters, sons, and friends who face the sobering prospect of a shortened lifespan. I walk for them.
Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.
You can support me!
By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.