Hi, my name is Joe (my family calls me Joseph) and I am 21 years old and a thriving young adult who also lives with CF. I am in my third year of college at CCAC (Community College of Allegheny County) and am working toward a Bachelor’s Degree in Business Management. In my spare time, I love working at TopGolf as a bay host, a trainer for new hires, and an event ambassador. I also play the drums, love going for walks at nearby parks, and growing a garden during the spring and summer time!
When people would ask me what it is like fighting Cystic Fibrosis every day, my response was normally "It's not that hard" or "I just take some pills and do some treatments." Truthfully, one word that comes to mind for myself and my parents who have helped take care of me all my life is "TIRING." I've never tried to burden people with what it truthfully is like living with CF and the sacrifices of time and energy it takes just to stay healthy. I'm beginning to learn that it is okay to tell people how it really is because raising awareness to enough people will ultimately help us reach the finish line which is finding a cure for this disease! Everyone who knows me will say that I continually have a positive attitude about life and never complain. I am so thankful for the life I have and the people I love that honestly whether I have CF or not, I still have a lot to be thankful for!
I probably coughed more often and harder in my 21 years than some smokers do in a lifetime. My mom has even said that it makes her want to cry because she knows how much effort it takes to cough as much as I do. That really hit home for me because my mom almost never cries. In spite of having this affliction, I always try to remain upbeat and believe I have encouraged more people over the years than I can count. Some days I simply don't want to get out of bed and spend 10 minutes getting my treatments together so I can sit down for over 30 minutes and do them. I don't want to spend 10 minutes every evening getting my cartons of supplement feed together so I can hook my feeding tube to the pump when I go to bed. This can all lead to procrastination (something I am very good at) but at the end of the day, the one motto that always creeps back into my mind is "Stay in the fight!" It can feel easy to just want to give up but in my heart of hearts I know that I can't. Too many people are supporting me and the power of the Lord will always be enough to help motivate me to keep on fighting! Through what I endure each day I want my message and story to be that I always try to inspire others to stay strong too!
Due to COVID-19, the Cystic Fibrosis Foundation (CFF) could not host Great Strides Walks throughout the country this year. My awesome local CFF put together a fantastic livestreamed pep rally on Facebook to keep the community close and raise awareness and money for CF. I was chosen as this year's CF Ambassador and got to speak during the pep rally. Here is the link if you'd like to watch it!
The pep rally and past walks are a personal reminder to me that many others live with and fight CF like I do. At these walks and at other fundraising events, I usually choke back tears seeing how many walkers, sponsors, and financial supporters care enough to invest in improving the lives of us CF patients. I am proud and humbled to lead my team Fighting For Joe. If you would like to make a donation to my team, this page is the place to do so. Thank you on behalf of myself and others with CF for your support and prayers over the years!
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.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.