Aimee Long

My niece, Delaney, is a carrier for CF - she also has a rare CFTR mutation, so rare, that there isn't even anything posted about it in medical journals. Under the advisement of a pulmonologist, Delaney was checked every six months since she was born because they weren't sure if her CFTR variant is CF-causing or not. Sometimes the check-ups included sweat tests, sometimes blood work, sometimes chest x-rays. 

On December 9th, 2021 - her latest chest x-ray showed progression of the fluid/mucous around her lungs. It was recommended that we start treating her for CF. Delaney was only 2 years old. It was the beginning of a long, trying, mentally and emotionally draining fight. Over the years, there has been a tremendous amount of groundbreaking milestones for the people with CCF. Unfortunately, at this time there still is no cure. 

And that is why we're walking!!!

The CF community has come so far, but there is still work to be done. 

Please support me!  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!