Dear Friends & Family, What a year 2019 has been with the FDA approval of Trikafta, a combination therapy drug that is a truly transformational milestone in the fight against Cystic Fibrosis. After only a few weeks of switching from Kalydeco to Trikafta, Michelle's cough became nearly nonexistent. Ever since 2013, she had been on a rigid routine of antibiotics every 2 weeks to maintain her "good health.” The regimen has been deemed no longer needed, drastically cutting back on the number & frequency of antibiotics. Michelle has had a profound & emotional realization that she feels the healthiest she has ever felt and her life’s trajectory has been changed forever from what she thought it would and could be. Amazing . . . truly amazing!!!
The impact on other CF patients was even more dramatic when a change in their ability to breathe happened in a matter of hours, accompanied with an increase in their lung function. Just over 50 years ago, CF was a deadly disease with no research and no treatments; today, it is one of the most amazing stories in medicine BECAUSE OF YOU. Thank you for joining the F TROOP Team as a walker, fundraiser, volunteer, donor & so much more. As her parents, we think back to the day when she was diagnosed and the despair we felt, but your love & support gave us hope and your determination to make a difference never wavered. It is so hard to put into words, but we are beyond thankful and grateful.
We are going to continue the fight for those that are not eligible for the new drug whether it be because of their rare gene mutations, lung transplant medicines or something else. The Foundation is continuing the research for All CF patients and for the ultimate cure. We will continue the F Troop’s team mission for funding research by virtually supporting the CF Walk. We appreciate everything you have done and do for our cause; we are extremely blessed and grateful.
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.