Cystic Fibrosis Foundation

We’ve come so far in pursuit of a cure for cystic fibrosis, and we have big plans for 2025. Our mission is to cure CF and provide all people with CF the opportunity to lead long, fulfilling lives — and we won’t settle for less. Thank you for your generous support!

As the year ends, we reflect on the progress we’ve achieved together, while recognizing how much more we need to do. Your support is needed today to help cure cystic fibrosis.    Every day without a cure is one day too many for people who live with this disease. We must continue to drive critical cystic fibrosis research forward.  Help advance the most promising CF science in 2025 and beyond. Give today: https://lnkd.in/gWgiKQ7r

The FDA approved the expansion of Trikafta to additional people with cystic fibrosis ages 2 and older who have certain rare mutations. Although this approval affects a very small number of people, it is another important step in making sure that everyone with CF has a treatment for the underlying cause of their disease. We know that between 10–15% of people with CF are not eligible for or cannot tolerate modulators. We are committed to ensuring everyone will have a treatment for the underlying cause of their cystic fibrosis, and ultimately, a cure.

The FDA has approved the new triple-combination modulator Alyftrek for people with cystic fibrosis ages 6 and older who have a mutation that is eligible for Trikafta or one of 31 are mutations that had not been approved previously for a modulator. “We are excited that there is another treatment option for people with cystic fibrosis, especially for those who previously weren’t eligible for a modulator,” said JP Clancy, MD, senior vice president of clinical research for the Cystic Fibrosis Foundation. “While we continue to support the development of newer and better modulators, we are also aggressively pursuing the advancement of genetic therapies, prioritizing developing treatments for people not benefiting from modulators.”  

Joseph Rosano, a pharmacist from Connecticut, has no personal connection to cystic fibrosis. However, after being nominated for Connecticut’s Finest, an event by the CF Foundation that recognizes outstanding professionals, he felt compelled to drive change for people with CF. “Now, I’m in it for the long run. I’m watching my CF patients reach new milestones, and my motivation is for every person with CF to have those opportunities.”  Joseph’s story is a testament to how one person can make a difference. So can you.   Today, while we have made significant advances with more therapies than ever before, people with cystic fibrosis need more breakthroughs and ultimately, a cure. You can help fuel the next breakthrough in CF research. Make your gift today: https://lnkd.in/gWgiKQ7r

Earlier this year, we asked you about your challenges with health care costs. Nearly 1,400 of you shared your experiences and results showed that though each person’s journey with the disease can look different, the burden associated with the disease can be felt regardless of socioeconomic background. Notably:  • Financial challenges are a widespread reality within the CF community.   • While nearly all people with cystic fibrosis have at least one form of health insurance, that’s often not enough to afford their care.   • High health care costs frequently lead individuals with cystic fibrosis to make difficult choices that negatively impact their care and treatment.  • Challenges with health care costs often lead to, or are worsened by, other health-related social needs.  • Different barriers can keep many in the CF community from talking about the financial hardships of CF and seeking support. The Foundation uses these research projects to identify initiatives and resources that may address and ease the financial burden so many face. Thank you to everyone in our community who shared their feedback with us. Read more: https://lnkd.in/eAFyTTj2

Thanks to you and the Stremick family, we met our GivingTuesday match — moving us one step closer to a cure without cystic fibrosis. We’re grateful — and pushing forward. Every day, people with cystic fibrosis and their families are counting on you. Explore opportunities to deepen your support of our shared dream — a cure for cystic fibrosis — by seeing if your employer offers a matching gift program to increase your impact: https://lnkd.in/e-duwVps

It’s GivingTuesday, and today you can help supercharge our mission and bring us closer to new breakthroughs for people with cystic fibrosis. Give now and have your gift matched, dollar-for-dollar, up to $250,000, thanks to the generosity of Nancy and Lou Stremick, whose granddaughter, Ella, has CF. While innovative treatments have helped some people with CF, no two journeys are the same. While Ella is currently doing okay and was able to start college this year — Amanda, another adult with CF, is looking forward to pursuing her dreams, including writing a book, and doesn’t want the risk of lung transplant rejection to get in the way. “Living with someone else’s lungs inside me is the most surreal, humbling gift that I’ve ever received,” said Amanda. “Even so, transplant is not a cure.” Progress for some isn’t enough. Every day, people with CF and their families are waiting for a breakthrough. Your gift can help us support the needs of the CF community in the future. Give today: https://lnkd.in/e-duwVps

From identifying research priorities to informing clinical care guidelines, Community Voice members play a vital role in shaping CF research, care, and programs. Their dedication and willingness to share their insights and experiences through surveys, focus groups, and committees help drive meaningful change in the CF community. Want to learn more about Community Voice? Explore current projects and discover how you can share your voice: https://lnkd.in/ewHYVy4c

Community Voice provides an opportunity to bring your unique insights and priorities to the forefront of cystic fibrosis research, care, and programs. By collaborating with the CF Foundation, researchers, and clinicians, members help shape a brighter future for the entire CF community. Tijana Milinic, MD, fellow, pulmonary and critical care medicine, University of Washington, shares how members impacted her work. “Partnering with the CF community helped us better understand the experiences of Black, Hispanic, and people of color in CF clinical research. This partnership is an important step toward building a more welcoming and inclusive research environment for all people with CF." Discover how you can share your voice. Explore a selection of our current projects, and join Community Voice today: https://lnkd.in/dtMEzJXm