Family Education Day is an annual event designed to provide useful information to parents, spouses, and patients. With an informal tone, it allows families to receive education from CF providers and ask questions without the time constraints that occur during clinic visits. The subjects of the presentations change with each event, but recent topics have included managing health care benefits and patient assistance programs, lung transplantation, transition from pediatrics to adult care, and CF-related diabetes. Beginning in 2014, the education day for the Scottish Rite clinic was combined with the Emory+Children's event. This traditionally happens in the spring and our hope would be to base this program on requests from patients and families. We also have another event in the fall, which focuses more on the latest developments in the science of CF. We plan to record all presentations make them available online for patients to view, as they cannot attend due to infection control policies.
The Children's Healthcare of Atlanta and Emory University Cystic Fibrosis Care Center held CF Family Education Day on Saturday, February 1, 2025, at the Arthur M. Blank Hospital. Center Director Rachel Linnemann, MD, kicked off the morning, providing an overview and state of the center. Dr. Linnemann noted that the Children’s + Emory Care Center cares for a diverse set of 750 people with cystic fibrosis. Our Care Center received the CF Foundation Outstanding Care Center Award at NACFC in September 2024 and continues to focus on quality improvement measures as part of the Cystic Fibrosis Learning Network, currently working on the care model based on the new guidance from the Cystic Fibrosis Foundation. The approval of Alyftrek and expansion of Trikafta to additional genetic profiles provides further treatment options for our patients, and exciting clinical trials are underway at Emory-Children’s.
Our keynote speaker, Deepika Polineni, MD, MPH, Professor of Pediatrics, Allergy & Pulmonary Medicine and Director of the Cystic Fibrosis Center at Washington University, St. Louis, spoke on “CF Gene Therapies: Where We Are Going and Where We Are Now.” The day concluded with Rapid Fire talks, including content on Mental Health, GI, and Transition Care by Emily Seibert, LPC, Vivek Shenoy, MD, and Brandi Middour-Oxler, DNP. Families had the opportunity to connect with clinicians, researchers, and each other.
Thank you to all of our in-person and online attendees, as well as the Cystic Fibrosis Foundation and Emory -Children’s Care Center team members for making this a successful day, and a great opportunity to learn and connect as a community.
Meet the Team
Nael McCarty, PhD
Center Director - CF-AIR and Marcus Professor of Cystic Fibrosis
Benjamin Kopp, MD, MPH, ATSF
Co-Director of CF-AIR and Director of the Pulmonary Sickle Cell Program
Arlene Stecenko, MD
Co-Director of the CF Center of Excellence, Marcus Professor of Pulmonology, and Director, Cystic Fibrosis Biospecimen Repository & The Georgia Cystic Fibrosis Data Warehouse
Marvin Whiteley, PhD
Co-Director, Emory-Children’s CF Center (CF@LANTA)
Kymry Jones, PhD
Associate Director, CF@LANTA Research
Clovis Sarmiento, MD
Associate Director, CF@LANTA and C3PO