This year is our 15th anniversary of supporting the CF Foundation. It is hard to believe how far we have come since that day in February 2005 when Emily was first diagnosed. We have seen so many advances in medications and therapies, and yet at the same time we have seen so many continue to lose their lives to this dreaded disease.
Emily experienced two amazing milestones in 2019--she graduated from high school and started college! The year was fairly typical in terms of her health as she transitioned back and forth between oral and nebulized antibiotics and iv antibiotics, battling the same aggressive bacteria in her lungs. She even started a very important research study for phage therapy in August. Then in late September Emily began to experience fatigue and an increased cough. By mid October she was very sick and hospitalized--unable to even produce lung function testing. We found a new antibiotic for her to try and she finally made it home from the hospital, but unfortunately had to give up her dorm room and move back home. Luckily, her professors have worked with her and she is able to continue with her coursework, for which we are so very grateful. Emily continues a rigorous treatment plan at home--six hours of IV antibiotics, 120 minutes of inhaled medications, and 80 minutes of chest physiotherapy every day.
As many of you know, regular doctor visits to UNC are part of our lives. The most recent visit in November resulted in a very emotional conversation for us. During the checkup, Emily's doctor suggested a referral for us to meet with the lung transplant team at Duke. While Emily is not quite ready to be listed for transplant today, it is time for us to have a "meet and greet" with the team in order to establish a relationship, if and when the time comes for an evaluation and transplant. If new medications aren't successful and/or the mycobacteria continues to cause damage to her lungs, this is a very real possibility.
Speaking of new medications, our latest hope in terms of the new CFTR modulator drugs is Trikafta---Emily as been on Trikafta since December. It has helped her with some weight gain and her lung function is slightly improved. So many people are having amazing results with this drug and we hope to see some continued improvements from it in the months ahead! While Emily and 90% of those living with CF can benefit from this drug, it is not a cure! We still have work today and that is why we continue to fundraise!
We hope that you can join our team with your donations and unity! We may not be walking together as planned, but we still need to continue our fight for a cure! Emily and all of those living with cystic fibrosis deserve it!! One day CF will stand for Cure Found!
Thank you “Emily’s Team”! We are so hopeful for Emily’s future with the opportunities and potential drugs that will ultimately add tomorrows to Emily’s life today!
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.