What's the Buzz — CF and Current Events

CF Senior Saturday Meet & Greet November 2025 Event Recap

Centering on the theme “What’s the Buzz: CF and Current Events,” this was a thoughtful discussion that explored new developments, lived experiences, and community collaboration surrounding aging with CF.

Key Takeaways

• Aging with CF is gaining increased recognition within the CF community, a significant milestone marked by the inclusion of an official Aging chapter in the CF Foundation 2024 Annual Data Report. This progress in understanding and addressing the challenges of aging with CF brings hope and optimism to our community.

• Recent NACFC sessions focused on aging, wellness, and risk reduction through lifestyle strategies, including nutrition and exercise.

• Participants reflected on recent events and advocacy efforts, highlighting the vital role of community in keeping CF seniors and late-diagnosed individuals connected, valued, and included.

Spotlight on Aging: Insights from the 2024 CF Registry

The 2024 Patient Registry Annual Data Report summarizes health data from people with CF in the U.S. who participate in the Registry. A new chapter on Aging—reflecting the 7–10% annual growth of adults over 40—provides a clearer view of this expanding population.

Insights from an NACFC Session

The session explored how aging intersects with CF, highlighting factors like inflammation, immune function, stress, telomeres, and vitamin D, and how CFTR modulators may help reduce inflammation.

Physical health and daily habits were emphasized, including the interconnectedness of body systems, proper posture, and the importance of establishing healthy habits early in life. Age-related complications—such as cardiovascular issues, chronic pain, bone loss, and muscle weakness—were discussed, along with strategies for prevention and management through screening, exercise, and coordinated care.

Hormonal changes, menopause, and increased cancer risk were also reviewed, underscoring the need for proactive monitoring. Overall, effective aging with CF requires a holistic, team-based approach that integrates multiple specialists and prioritizes long-term health and well-being.

Challenges of Living with and Explaining CF

Participants discussed the emotional and physical challenges of living with CF, particularly as a person ages, and the added difficulty of explaining an often invisible disease to others. Many shared the emotional toll of repeatedly describing CF to family, friends, and healthcare providers, and the frustration that comes when the daily impacts of the condition are misunderstood.

The group emphasized the importance of empathy, compassion, and surrounding oneself with supportive people who “get it.” Effective communication strategies and counseling were highlighted as valuable tools, especially for those diagnosed later in life—to navigate family dynamics, correct misconceptions, and advocate for their health. The conversation also included the challenges of healthcare navigation, including finding primary care physicians who collaborate with CF clinics and understand the complexities of CF care.

Advocacy and Self-Management

Several members emphasized the value of being proactive and informed in managing their health. Sharing personal examples, participants described creating comprehensive lists of symptoms and concerns for their care teams, using trusted resources like CFTR2.org to learn about genetic mutations, and exploring how newer medications impact overall health and quality of life.

There was also discussion about the importance of self-advocacy, especially for those diagnosed later in life, and how connecting with the community helps foster both knowledge and confidence.

Treatment Experiences and Decisions

The group exchanged insights on CF medication management, as well as considerations around mental health side effects and interactions. Participants emphasized the importance of shared decision-making with healthcare providers and the growing conversation around the need to adjust doses to reduce side effects while maintaining efficacy.

Continue Learning & Get Involved

• Explore NACFC 2025 highlights, CF Foundation 2024 Patient Registry Report to continue learning about the evolving landscape of CF and aging.

• The CFTR2.org website provides information about what is currently known about specific genetic variants related to cystic fibrosis.

• Attend the next CF Senior Saturday on December 13th for the “Cookies and Cocoa” virtual holiday event.

• Complete the CF Senior Community Survey to help shape next year’s meeting topics, projects, and guest speakers.

• Follow Halite Solutions Group on social media for updates, event announcements, and new resources on aging with CF.

• Sign up to participate in the 2026 CF Project Groups.  Email kristina@halitesolutionsgroup.org for more information.

Closing Thoughts

This month’s conversation reflected the strength and insight of a community that continues to grow, adapt, and advocate together. From navigating invisible challenges to shaping the future of CF care for older adults, our members continue to prove that aging with CF is not just possible, it’s powerful.