This is our 22nd year participating in Great Strides. It is very different this year and virtual. I thought it would still be appropriate to send an update. As I write this, I am distanced from everyone and appreciate that many people have reached out in concern for me. It means a lot, and I am taking precautions very seriously. The threat of this virus could be devastating to anyone living with Cystic Fibrosis.
I think our focus for Great Strides this year is recognizing and celebrating the accomplishments that have been made for the CF community. We are entering a time with transformative therapies and new technologies in treating CF. This year ‘Trikafta’ has been in national news and is a new drug modulator that has been helping a higher percentage of CF patients. Trikafta isn’t for my genetic mutations, but I’ve been fortunate to have Kalydeco which we believe has been helping me the past 3 years.
I am 21 years old and technically a first semester Senior at Messiah College studying finance. I am finishing the semester off campus remotely, but I was involved in some recreational sports and a volunteer Wyldlife middle school leader (affiliated with Young Life). This past summer I enjoyed managing our new family business, Steamboat Landing, in Blue Mountain Lake, NY. This is a seasonal lodging business with 16 accommodations on the lake. I really enjoyed our first season, and I’m looking forward to working there again.
My overall health and lung function have been very good. I still need breathing treatments, my vest, lots of pills, and have a port-a-cath in my chest ready if I need iv antibiotics. My daily routine and care of my disease is always a priority.
We are still fundraising, and we understand the financial challenges during this turbulent time. Any gift of any size has an impact for the CF community. If you are not able to give, we understand. We are going to miss being with others for the walk and will really miss having our ‘Cornhole for a Cure’ event. Despite not being able to be together, celebrate with us in the advances that are being made for those living with Cystic Fibrosis and keep praying for the health of all in our communities.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.