Program Overview
This event is for those with CF and their family members (age 16 and older) who are living with advanced CF lung disease or navigating the transplant journey – from considering a transplant to life post-transplant. NextBreath is a free, online event that provides an open space for all people living with CF and their family members to find support, have candid conversations, and make meaningful connections. This event will feature an opening keynote, “Ask me Anything” seminar, group chats, 1:1 networking, and small-group video breakouts to connect with others going through similar experiences. The focus will be on overall well-being and personal experiences, not clinical care. Registration will close at 5:00 p.m. ET on Thursday, February 24. For questions about this event or for registration support, please email communityconferences@cff.org.
Agenda
Session Formats
Keynotes and Panels feature speakers presenting to the audience. Participant cameras and microphones will be off. Participants will be able to chat with other attendees and submit questions to the speaker or panelists. Keynote and panel sessions are recorded.
Small-group discussions are where participants interact in small-groups through video (camera and microphone can be turned on) and are led by a trained facilitator through a topic-based conversation. Find support and have conversations with people going through similar experiences as you. Small-group discussions are NOT recorded.
Name | Session Format | Description |
---|---|---|
7:00 PM - 7:40 PM (EST) | ||
Navigating Uncertainty and the Power of Resilience | Keynote | |
7:45 PM - 9:00 PM (EST) | ||
Ask Me Anything | Panel | Interactive “Ask me Anything” session hosted by people with CF and their loved ones. Get answers to your most pressing questions about living with advanced lung disease or navigating the transplant journey. This question-and-answer session is not intended to be a substitute for medical advice, diagnosis, or treatment recommendations. Do not make any changes to your own treatment plan without first consulting your care team. |
Finding Resilience as a Caregiver | Small-Group Discussion | This session is intended for any caregiver of a person with advance CF lung disease and/or in the beginning, middle, or post-transplant phase. |
Finding Resilience while Waiting for My Miracle Drug & Living with Advanced CF Lung Disease | Small-Group Discussion | This session is intended for any person with CF or caregiver who can not take Trikafta or another CFTR modulator either due to tolerance, rare or nonsense mutation, or other reason. |
Maintaining Resilience While Preparing to Undergo Transplant | Small-Group Discussion | This session is intended for any person with CF or caregiver who is currently preparing for the transplant process or awaiting the call. |
Maintaining Resilience with Post-Transplant Complications | Small-Group Discussion | This session is intended for any person with CF or caregiver who is post-transplant and managing post-transplant complications. |
Navigating Uncertainty with Advanced CF Lung Disease While on CFTR Modulator Therapy | Small-Group Discussion | This session is intended for any person with advanced CF lung disease or caregiver (pre- or post-transplant) who is taking Trikafta or another CFTR modulator. |
Surviving and Thriving Post-Transplant | Small-Group Discussion | This session is intended for any person with CF or caregiver who is post-transplant with minimal complications. |
9:05 PM - 9:15 PM (EST) | ||
Closing: Continue the Connection | Closing | Tune in to close out the event and learn about additional opportunities to connect with the CF community and continue the conversation around living with advanced disease or navigating the transplant journey. |
9:15 PM - 9:45 PM (EST) | ||
1:1 Networking | Social | Get matched randomly with another attendee for a 5-minute, 1:1 video conversation. You can extend it or leave early to be matched with someone else if you're not connecting. |