When a group of parents started the Cystic Fibrosis Foundation in 1955, there were no treatments for cystic fibrosis. These parents set their sights high -- to advance understanding of this little-known disease, to create new treatments and specialized care for their children, and to find a cure. The Foundation's steadfast commitment to advancing CF research has helped enable more than a dozen new treatments for the disease. We have made incredible progress, including the approvals by the U.S. Food and Drug Administration (FDA) of ivacaftor (Kalydeco®), lumacaftor/ivacaftor (Orkambi®), tezacaftor/ivacaftor (Symdeko®), elexacaftor/tezacaftor/ivacaftor (Trikafta™), Cayston®, and tobramycin (TOBI®).
As you all know Eli is doing incredibly well. He is an active 8 year old who has decided to take up fencing. It is because of our commitment to his daily treatment, help from his teacher and school nurse, quarterly visits to CF clinic, enzymes, and some luck that he has been able to pursue his interest. He was able to participate in the dosing trial for Orkambi at the age of 4. We plan to transition him to Trikafta once the FDA approves it for 7 to 12 year olds.
"We are entering an age of unmatched scientific understanding and development of genetic-based therapies. Now is the time for a bold commitment to stimulate industry investment in CF to capitalize on the current pace of progress and draw these advances toward the people in our community who need them most."
We invite all of you to join us May 2 at the Austin Zoo for the annual Great Strides walk. For more than 30 years, Great Strides – the Cystic Fibrosis Foundation’s largest national fundraising event – has helped fuel the Foundation’s mission to cure cystic fibrosis and raise awareness for this rare, genetic, life-shortening disease that makes it difficult to breathe. By walking with me, you can help accelerate our pursuit of new therapies and provide vital support to meet the evolving needs of our community.
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.