Spencer is now 22-years-old and is wrapping up his junior year at NC State University, majoring in psychology. Grad school is in his future, but he is going to work a year to gain some research and/or hands-on experience. Last year he had to write an essay regarding living through a global pandemic with a chronic illness. His response was as follows:
"One cannot expect life during a pandemic to be easy, especially if you have a pre-existing condition. You cannot control the pandemic and its impact on others; however, there are many ways that you can adjust your lifestyle and come out stronger. During the start off the pandemic, there was little known about the virus and its effects on people with chronic illnesses, like Cystic Fibrosis. It can be scary but by taking extra precautions we can gain more control over how the pandemic impacts our health. Having CF, we have always had to make certain adjustments to our health routines, and living in a pandemic is no different. This has helped us to persevere no matter what unexpected obstacles we face."
Spencer continues to display few symptoms of CF since starting Trikafta. The big news this year is that the average life span for an individual with CF has climbed into the 50s. Even better news is that Spencer's doctors have told him that he can expect to have a normal life span!!
We are so grateful for our family and friends who have supported our cause year after year after year, donating money to support the research that has led to this significant breakthrough in treatment.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, 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 well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.