Maria Miles

I'd like to introduce you to my beautiful Cystic Fibrosis Warrior. Harper appears to be your typical sassy 4 year old. However Harper and about 40,000 others in the US have been diagnosed with Cystic Fibrosis. CF is a rare genetic, progressive, terminal illness that primarily affects the lungs. Harper also has Pancreatic Insufficiency (PI). Her pancreas cannot absorb the nutrients she needs without pancreatic enzymes. She has to take 6-8 pills with every meal/snack along with her daily meds, breathing treatments and "the vest (High-Frequency Chest Wall Oscillation). The vest is worn for 20-30 minutes and vibrates the chest to help break up mucus. Imagine getting a 4 year old to cooperate with all of that! Harper and her parents amaze me daily! 

Recently a huge breakthrough was made in the CF community. The FDA approved Trikafta, known as “The miracle drug” and it is drastically changing the day to day life for a person living with Cystic Fibrosis. Harper will be starting this medication end of June mid July and we can not wait! While being life changing/saving it is still not a cure and only specific mutations are eligible for this medication. Generous donations to the Cystic Fibrosis Foundation are what helped this historical day happen. If you’d like to join our fight in finding a cure, please consider donating, sharing or signing up to walk with us at the Great Strides walk on May 21st. 

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 me!

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! Thank you for your support!