I have been so happy since the Cystic Fibrosis Foundation announced the FDA approval of the Triple combination drug, Trikafta. We knew this drug was coming up through the CFF pipeline, but the announcement at the annual CF Conference last month made us breathe a huge sigh of relief. We have always felt in our hearts that Clay would live a long and healthy life, but the idea that so many people with CF would join him, and even have to start planning for retirement, made the feeling in our hearts a true reality.
Knowing that there is now a drug that can keep lung function and weight high took away so much anxiety about our families’ future. We dreaded the day that Clay’s lung functions would only decline and not recover as they have in the past. Now we feel that we don’t need to worry.
Although the news is wonderful, we continue to raise money and awareness because there still isn’t a cure. Clay will now definitely live a long time. We want him to be as healthy as possible as we don’t know what other medical issues might arise with living a longer life with CF. When he was diagnosed, life expectancy was early 30’s.
So, Thank you! Thank you! Thank you, for supporting us through all these years. Both the financial and emotional support have been tremendous. And we are forever grateful.
This fall, Clay moved to Chicago and started a Master’s program in Middle East Studies at the University of Chicago. He is thriving in the big city with his absolutely amazing girlfriend Simone Siew. We took a family trip to visit them recently in their new apartment in the South Loop of Chicago—just north of Chinatown. They are thriving!
Clay continues to do his twice daily treatments, take lots of pills, and visits his doctors to stay healthy. He should be on Trifakta soon. We hope the new drug will help bring him maintain strong lung functions.
Please consider contributing to the research funded by the CF Foundation by supporting Team Clay in the Great Strides walk. The Cystic Fibrosis Foundation is an amazing forward thinking charity that is driven to deal with Cystic Fibrosis and the many ways it affects people who have CF.
You can donate to your favorite member of Team Clay or help one that is falling behind in donations.
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.