Myra Giaffoglione

Our journey began when our first child, Jack, was diagnosed at just 10 days old in 2012. At that time, the future looked uncertain, with the average life expectancy for CF patients only around 35 years. Despite our initial devastation, Adam and I found hope for our family as we watched Jack thrive under the incredible medical care he received at Omaha Children’s Hospital, the support of our family and friends, and the remarkable strength of the community we found ourselves among. We learned that CF families before us had banded together with devoted medical professionals and scientists to establish the very best standard of care for CF patients and to uncover groundbreaking new medications with the promise of making CF a curable or maneagable condition rather than a terminal disease.

In 2014, our daughter Abigail was born with CF and joined her brother in his daily treatments, medications, regular clinic visits and eventual hospital stays required to maintain the health of their lungs and other systems of the body that CF effects. You can watch "a day in the life" of Jack & Abigail growing up with CF in these videos - featuring songs composed and performed by Adam! - at this link: https://bit.ly/4bdevZM

In 2021 our family moved from Iowa to Maryland, where I had started working at the CF Foundation National Headquarters in Bethesda. Shortly after our arrival our dreams came true when the FDA approved Trikafta, our long-awaited “miracle medication”, for qualifying children with CF ages 6 to 11. Since adding this new medication to their regimen, Jack and Abigail have experienced remarkable improvements in their health and freedom from some of the most limiting aspects of their condition. Now at ages 10 and 11 they are bursting with energy and living life to it’s fullest!

Today, thanks to advancements like Trikafta, the outlook for our family and for many people with CF is signifigantly brightened, with a median life expectancy now around age 56 and climbing every year. However, despite the incredible progress that has been made, Trikafta is not a cure and there are many CF patients who simply cannot access it’s benefits due to barriers including eligibility based on their “type” of CF or their body’s ability to tolerate this new medication.

We share our family's story and devote the time we have been gifted to continuing the pursuit of a cure for CF and it’s equitable access for every person affected by this disease. Our story is proof that your generosity in supporting this cause will make a difference.

Please consider joining us on the National Mall the morning of June 1 as we gather to celebrate the progress that has been made and raise funds to continue our pursuit of a cure. Whatever means of support your are able to offer our cause, Adam, Jack, Abigail, and I are deeply grateful. Together, we really will make a difference for every family impacted by CF.