On August 31st 2017, Frankie Elizabeth, our third child and second daughter, joined our beautiful and blessed family. Nearly three weeks later, she was diagnosed with cystic fibrosis - a genetic lung disease that does not have a cure. And a little over a year later, on September 11th 2018, we found out our 5 year old son, Owen, also has cystic fibrosis.
Both children have a team of doctors that evaluate them every 4-6 weeks and my wife and I have to give each child 2-3 breathing treatments a day with airway clearance vest in the morning and night. They also have a lot medications and vitamins they must ingest daily just to stay healthy.
Seventeen years ago, the average life span of a child with CF was about 19 years of age; today, it's up to 42 years. A lot of progress has been made with new treatments and medicine, yet there is very little federal money (we were told it's next to nothing) dedicated to CF research. As a result, parents and families of loved ones with CF raise the majority of money dedicated to improving the quality of life for CF patients through the research and development of new treatments and medicine with the hope of someday finding a cure.
My wife and I are building a team - an army if you will - dedicated to fighting cystic fibrosis for our son and daughter, Owen and Frankie, as well as the other 30,000 kids and adults impacted by this disease in the U.S. If you are interested in joining OWEN & FRANKIE'S ARMY, select Join Our Team at the top of the page to join us in this fight.
***Frankie's Army originally assembled in December of 2017 for the CF Holiday Walk in Scottsdale, AZ just a few months after the birth of Frankie Pettinato. Frankie's Army enlisted over 112 recruits with over $10,000 raised for CF research. Consequently, Frankie's Army was the top team for the event with the most members registered and most dollars donated to CF research.***
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.