Have you registered for the 2017 North American Cystic Fibrosis Conference (NACFC) live-streamed sessions yet?
For the past two years, I've had the privilege of being the representative of adults with CF on the NACFC Program Planning Committee. My main objective in this role has been to ensure the sessions that are live-streamed serve the needs of adults with CF. I've reached out to many CF community members in the past to ask, “What do you want your care teams to hear or learn more about at NACFC?” My role on the planning committee has also allowed me to influence what content will be live-streamed.
There are a variety of sessions available to view via live stream -- making them available to those who can't attend NACFC. The three plenary sessions are always live-streamed. This year, the plenaries focus on developing drugs that target the underlying defect of the disease for everybody with CF, the lung transplant process and post-transplant care, and how people with CF and their families can make a difference by partnering with the larger community as advocates. In addition, a variety of breakout sessions will be live-streamed on topics such as pulmonary guidelines, digestive issues, nutrition, exercise, and cystic fibrosis-related diabetes.
NACFC will offer many other unique and interesting sessions. One that is close to many of our hearts and minds is about health care reform and how this may impact those of us with CF. Another session discusses the struggles of coping with an invisible disease, including navigating when and how to disclose your health status and managing invisible symptoms such as CF-related pain. Yet another explores how technology can be used to improve emotional wellness, quality of life, and our health outcomes. You'll also find discussions of complementary and alternative therapies. Partnership and collaboration are overarching themes for live-streamed sessions that deal with topics such as daily care, nutrition, and even palliative care.
The primary intended audience of NACFC is our CF care team members and scientists. So, why should you, as adults with CF, CF family members, or caregivers of those with CF, register to watch and listen as well?
Knowledge is power! The more we know about our disease, the better advocates we can be for our own health.
We can be empowered to be more actively engaged in partnering and collaborating with our care teams. We should strive to know as much as possible about our own bodies!
Just as important, watching the live streams gives me so much hope. The amount of progress and research in all aspects of the disease and for people in all stages of life with CF is, frankly, mind-blowing. I find it hard to feel isolated with this disease knowing there are close to 5,000 conference attendees who are dedicated to understanding and improving our lives with CF … even if I am personally, at home, watching in my pajama pants while doing the vest.
