Friends & Family-
There is more exciting news within the cystic fibrosis (CF) research community than ever before. However, there is still work to be done to keep the momentum going, and I need your help! Keep reading to learn more about my journey with CF, and please consider making a donation by clicking the 'Donate To Lydia' button.
I am one of over 30,000 people in the U.S. who lives with cystic fibrosis. CF is a genetic, life-threatening disease that affects the lungs and digestive systems, causing persistent lung infections and progressively limiting the ability to breathe due to the buildup of thick mucus (think mucus the consistency of peanut butter). The thick mucus also means I do not have the ability to digest any fat or protein on my own. As a result, every day I spend an hour doing treatments to shake the mucus from my lungs, and take almost 30 pills throughout the day. I do this every day just to combat my symptoms. There is no cure for cystic fibrosis and the average life expectancy is just under 40 years old.
I have directly benefitted from the research that your past donations to the Cystic Fibrosis Foundation have funded. In May of 2018 I started on Symdeko, a new CFTR modulator medication that essentially corrects part of defective gene that causes CF. Long story short, it goes beyond treating symptoms and aims to decrease the rate of decline in lung function by 40%. Since starting Symdeko my lung function has maintained. However, while Symdeko and other new drugs currently being studied are amazing and offer real hope for the future of CF, they are still not a cure. In fact, they bring a new set of complications with long-term use that are still unknown.
I am proud of the contributions I’ve made to the CF community, and am amazed by the generosity of my supporters. Last year I was the top fundraising team in Omaha raising just over $20,000, thanks to all of you! I recently started sharing my story on Instagram (@Inspireinthesandbox). I am also beyond grateful to have received the 2018 CF Star award for the Nebraska CF Foundation Chapter (pictured). In addition, I’m thrilled to announce that I am the official Great Strides Ambassador for the Omaha walk, sharing my tips on fundraising with other team captains.
While I’m proud of what I’ve accomplished, and am so thankful for your support, I need to do more. We need to do more. We need a world free of CF and all of its complications. We need a world where CF doesn’t take lives. I lost friends and individuals I look up to this past year because of CF, and we can’t let that keep happening.
With that, I’m bumping my fundraising goal to $30,000 this year! Dollars raised go towards research and resources for the CF community. Your dollars create a brighter future for me and everyone impacted by this cruel disease.
Please consider helping me in this fight and use the 'Donate To Lydia' button to contribute. Every dollar helps and is truly appreciated!
CF will one day stand for cure found and I won't stop until it's done.