Cystic Fibrosis Foundation

Please join us in congratulating Jill Fliege, nurse practitioner and program coordinator at Nebraska Medicine’s adult CF program, one of two recipients of this year’s Mary M. Kontos Care Champion Award. This award is given to individuals who have made significant contributions in the field of specialized cystic fibrosis care. Jill is described as enthusiastic, passionate, and deeply dedicated to people with CF, families, fellow care team members, and the CF community. In her role as program coordinator and nurse practitioner at her adult CF program for more than two decades, she has been instrumental in fostering a cohesive team culture. She has participated in numerous CF Foundation committees, serving as the first program coordinator representative on the Foundation’s center committee. In addition, she supports the growth of the next generation of CF health care professionals by mentoring program coordinators and advanced practice providers. Her leadership at her CF program has been a driving force for improvements to care for and with people with CF, including supporting the program’s Adult CF Advisory council.

Congratulations to Monica Ulles, pediatric CF nurse practitioner and nurse manager of pulmonary research nursing at Boston Children's Hospital and Brigham and Women’s Hospital CF Center, one of two recipients of this year’s Mary M. Kontos Care Champion Award. This award is given to individuals who have made significant contributions in the field of specialized cystic fibrosis care. Monica served as a nurse coordinator before becoming a pediatric nurse practitioner in care and clinical research at her center. Her center director describes her as a role model for her whole team, and a consummate professional who is devoted not only to her patients but to the entire CF center.   For more than four decades, she has participated in local and national CF care and clinical research committees, while always keeping sight of what matters to patients and families. She has advocated for nursing professionals in CF to have greater opportunities to contribute on a national level and is passionate about preparing the next generation of CF care providers, generously offering her time to teach and mentor new colleagues.  

ROSE UP, now in its fifth year, is a fundraising event that brings the entire cystic fibrosis community together to get creative to help advance the mission of the Foundation. Events such as this would not be possible without the support of our sponsors: Abbvie, Vertex, Nestle Health Sciences, Walgreens, and The Joey Fund. Working together, we are confident that one day, not one person will lose a child, sibling, parent, or friend to CF.

We’re excited to announce that the CF Foundation will develop its next long-term strategic plan in 2025 to guide our efforts in the years ahead.  It’s important that our next plan reflects the diverse and evolving needs of the CF community — including yours. That’s why we’ve launched a survey aimed at gathering insights from people with CF, families, clinicians, researchers, donors, volunteers, and all those who advance our shared mission. Your knowledge and dedication are important to our progress. Take the survey now to help inform our mission-driven work. The survey takes about 10 minutes to complete and closes October 16, 2024: https://on.cff.org/3Zr5ZTZ

Every baby born with cystic fibrosis deserves a timely and accurate diagnosis to stave off disease progression, putting them on a path to better health over their lifetimes. In pursuit of our mission to help all people with CF lead long, healthy lives, we have consistently advocated for improvements in newborn screening, including establishing a Newborn Screening Initiative to assess and improve equity, sensitivity, and timeliness in CF newborn screening. In recognition of Newborn Screening Awareness Month, we reflect on our ongoing efforts to improve newborn screening, including developing recommendation guidelines to improve screening methods within state programs. https://lnkd.in/eCFGsjyW

We’re proud to celebrate CF Peer Connect for reaching a huge milestone: more than 1,000 matches made! CF Peer Connect is a one-to-one peer support program for people with cystic fibrosis and their families to share, learn, and connect about shared experiences. After requesting a connection, the team matches you with an adult with CF or family member who has experience with the topics that matter most to you. Aimee Jeffrey, director of community support and connection, shares what it means to reach this new milestone. “Since CF Peer Connect began in 2016, we have served over 1,000 community members, expanded the topics offered, and made personalized matches for so many people — thanks in large part to the more than 300 mentors who give their time to support others. Their vast experiences, willingness to be honest and open, and desire to give back to the CF community enables us to match all those who request peer support. We look forward to continuing to serve the community and making another 1,000 matches,” Aimee said.

The number of people with cystic fibrosis requiring a lung transplant continues to be low compared to numbers before Trikafta (elexacaftor/tezacaftor/ivacaftor). In 2023, 61 lung transplants were reported among participants in the CF Foundation Patient Registry, including 44 first-time lung transplants and 17 repeat lung transplants. In 2018, 259 lung transplants were reported. Although the number of lung transplants is low, reflecting improved health among many people with CF, 1,752 people with CF are now living with a transplant. We remain committed to enhancing the transplant experience and outcomes for individuals with CF in need of transplants. Explore more data on people with CF in the 2023 Patient Registry Highlights Handout: https://lnkd.in/g8u5ap5a

Curing cystic fibrosis and caring for those with the disease is a community effort. That’s why on the fifth anniversary of ROSE UP we’re incredibly thankful to our sponsors: Abbvie, Vertex, Nestle Health Sciences, Walgreens, and The Joey Fund. Together, we can end cystic fibrosis.

Living with a chronic disease, such as cystic fibrosis, can be emotionally challenging. According to 2023 CF Foundation Patient Registry data provided by CF care centers, 26% of people with cystic fibrosis in the U.S. age 12 years and older have depression and 28% have anxiety. Increased rates of mental health screening conducted at CF care centers may contribute to a rise in reported depression and anxiety. Read more data on people with CF in the 2023 Patient Registry Highlights Handout: https://lnkd.in/g8u5ap5a

When the Cystic Fibrosis Foundation was established in 1955, people born with the disease weren’t expected to live to attend elementary school. Today, about 60% of people with cystic fibrosis in the U.S. are now adults, according to 2023 CF Foundation Patient Registry data. In 2003, there were about 8,000 adults with CF, but by 2023, the number rose to about 20,000. As a growing number of people with CF enter adulthood, it’s inspiring to see many receiving college degrees and pursuing careers. In 2023, 41% of adults with CF have a college degree and 65% have full-time or part-time jobs. Explore more in the 2023 Patient Registry Highlights Handout: https://lnkd.in/g8u5ap5a