Every breakthrough the Cystic Fibrosis Foundation achieves represents more than just the breakthrough – it’s a life change, a dream pursued. A family given hope.  Behind each success is someone with CF still waiting for treatment and counting on you and me to keep striving for a CURE.  

Thanks to your unwavering support, the Foundation has made remarkable progress towards that mission.  Today, there are 17 treatments available and 5 target the underlying cause of Cystic Fibrosis.  These are incredible milestones for people who can benefit from them.  For Sophia and Savannah, they can breathe easier and dream bigger.  

Below you will see a progress report which highlights the impact your generosity has helped make possible.  Your contributions help drive the CF Mission forward:

 10+ potential genetic-based therapies in the development pipeline

200+ infection studies funded including phage therapy, multi-organism infections, and Burkholderia cepacia

30+ therapies in the drug development pipeline, with potential to significantly improve the lives of those living with CF

260+ studies completed or currently enrolling by the Therapeutics Development Network.

40+ multicenter Clinical Trials requiring coordination and significant engagement from the CF community

Up 60% of the entire CF population are adults now, which is driving an evolving approach to health care

125+ meeting with congressional offices to advocate for people with CF and to ensure access to care and support for research and drug development 

130+ accredited CF Care CEnters deliver care to people nationwide each day, which  the Foundation helps fund. 

The Cystic Fibrosis Foundation has agreed to invest up to $2.3 Million in Owlstone Medical to develop a test that is designed to detect Pseudomonas Infections from a person’s breath  In addition to detecting new infections, the test is intended to enable care teams to monitor chronic infections in people with Cystic Fibrosis.   A pseudomonas infection is usually diagnosed by culturing a sputum sample – mucus or phlegm coughed up from the lungs.  This is difficult for younger children.  Sputum cultures also can miss early signs of infections.  Once Pseudomonas is established in the lungs it is difficult to eliminate, so early detection and treatment is crucial in eradicating these infections. 

Among those tested in the foundation, excluding those who have had transplants, about 25% of people with CF were found to be positive for Pseudomonas in 2023 and nearly 13%of them had multi-drug resistant strains of the bacteria.  Accurate detection of which bacteria are present can reduce unnecessary antibiotic use that can lead to drug resistance.  

Recently the FDA approved the new ONCE-A-DAY CFTR modulator for people with CF.  Alyftrek has 3 components ===Vanzacaftor + Tezacaftor+Deutivacftor. Sophia and Savannah will change from Kalydeco to Allyftrek in hopes to improve their lives.  This drug is not supposed to have the side effects of previous drugs.  

Still,our work is far from over.  Too many people with CF still can not benefit from the existing treatments, and they rely on us to keep pushing forward.  Developing transformative genetic therapies is one of the most ambitious and costly efforts the foundation has ever undertaken – but these therapies hold the promise of changing the future for EVERY PERSON with Cystic Fibrosis.  

Your generosity helps make this progress possible.  Every donation fuels the hopes and dreams of those living with CF and gets us closer to a world where CF is HISTORY.  It means living with more hope and less uncertainty.  For the world’s leading CF scientists, it means obtaining the resources needed to get closer to finding the cure.  YOU have accelerated the progress and honored the rich legacy of those CF community members who came before us all.

Sophia and Savannah have had a challenging year.  They have been ill but not ill enough to be hospitalized.  Jackie knows this disease and how it progresses.  She is the heart, the soul, and the advocator behind the scene.  Increasing the breathing treatments with medication in the very beginning of the illness is part of the key to reducing the chances of a hospitalization.  

Mike, Bryan, Jackie and myself want to thank you for STANDING WITH US IN THIS FIGHT.  Together, WE ARE MAKING A PROFOUND DIFFERENCE== ONE PERSON, ONE DREAM ONE BREAKTHROUGH AT A TIME.  .  Behind every breakthrough–Sophia and Savannah can dream of a brighter future.  You are a part of our journey. Words can not express how grateful we are for YOU