The North American Cystic Fibrosis Conference (NACFC) is the premier event for professionals involved in the care for people living with CF. The Cystic Fibrosis Foundation (CFF) has been increasing its efforts to extend the NACFC to the CF community at large. CFF has announced a couple of ways individuals can participate virtually which not only saves travel expenses but also addresses cross-infection concerns.
Here are the instructions from an CFF e-mail for connecting to the NACFC.
The North American CF Conference (NACFC) is a scientific and medical conference for professionals in the field of CF research and care. This annual meeting brings together scientists, doctors and caregivers from around the world to discuss recent progress in CF research, care and drug development and exchange ideas about ways to improve the health and quality of life for people with CF.
At this year’s NACFC in Orlando, we will be live streaming the three plenary sessions, as well as several symposia, workshops, a short course, and a brown bag session.
Please see the “Broadcast Schedule” tab (above) for a complete list and description of sessions that will be streamed live. To watch the sessions, you will need to register by clicking on the button to the right.
Sessions will feature talks by leading CF experts on topics of major interest, including: clinical advances in CF research, growing older with CF, delivering high-quality care in the evolving health care landscape, and advocating for patients in education and employment.
The content of the plenaries, symposia and workshops and other sessions is intended for research and medical professionals and may not be appropriate for a lay audience, especially children under the age of 18.
Archived versions of each of the live sessions covered will be made available on this website approximately 24 hours after their initial broadcast.
NOTE: The live streaming page has links to a list of NACFC sessions and registration for live streaming
CFF Facebook Broadcasts (from the CFF Blog by Emily Dulcan)
I’m excited to announce that this year at the NACFC we will be broadcasting a live session each day that has been created for the CF online community. The three broadcast sessions will stream through Facebook Live, directly from the Cystic Fibrosis Foundation Facebook page.
It’s incredible to me how quickly technology develops. The NACFC was one of my first events as a Foundation employee, and live streaming anything required a lot of equipment and finagling a strong internet connection deep within the heart of a convention center. In just a couple of weeks, all we’ll need is an iPhone, a wireless signal and a tripod. That’s what I call progress!
However, I’m most thrilled about the topics we’ll cover and the guests who will join us. The NACFC attracts the best and brightest CF researchers and clinicians, and I am so pleased that we have been able to capture some of that knowledge in sessions that are relevant to you.
See below for the times and topics, and make sure you join us through our Facebook page!
“Exercise and You”
Thursday, Oct. 27, 2-2:45 p.m. EDT
Everyone wants to know: What kind of exercise should I be doing and how much do I need? These questions are particularly important for the health of people living with CF. In this session we’ll dig deeper into the specific benefits that go beyond lung function.
Learn about good physical activity based on your age the precautions you should take if you have potential barriers to exercise. These barriers include the use of supplemental oxygen and whether you have CFRD, low BMI or a pulmonary exacerbation. This session will also cover recommendations for aerobic exercise, habitual physical activity, and resistance and weight training.
Guests:
Dr. Larry Lands, Director, Pediatric CF Clinic, Montreal Children’s Hospital-McGill University Health Centre
Blythe Owen, Physiotherapist, Cystic Fibrosis Clinic and Respiratory Medicine, The Hospital for Sick Children in Toronto
Jane Schneiderman, Ph.D., Registered Kinesiologist, Exercise Physiologist, Exercise Medicine Lab, Clinical Research Centre at The Hospital for Sick Children in Toronto
“CF Foundation Community Connections and Partnerships”
Friday, Oct. 28, 4:30-5:30 p.m. EDT
The CF Foundation cannot achieve its mission without the voices of people living with CF. As the Foundation works to achieve its expanded mission — to both cure CF and provide opportunities to people with CF to live full, productive lives — we are creating ways for the CF community to connect with each other and partner with us.
This session will explore:
Partnerships for Sustaining Daily Care, a strategic initiative to support CF care by encouraging dialogue between care teams and people with CF and their families
How to join the CF Adult and Family Advisors, a group that provides the community voice and insight on matters such as CF care, research and quality of life to the Foundation and its partners
Opportunities for connecting people with CF to their peers to share their experiences one-on-one
BreatheCon, a virtual event by and for people with CF
Guests:
Rebecca Schroeder, mother of a child with CF, member of the Partnerships for Sustaining Daily Care
Kristin Dunn, member of the Adult Advisory Council
Aimee Jeffrey, Community Support Manager, CF Foundation
Chad Reidy, adult with CF, BreatheCon Working Group Member
“How to Get Involved in CF Research”
Saturday, Oct. 29, 1-1:40 p.m. EDT
Have you ever wondered about how to be a part of research for CF treatments? People with CF, their caretakers and their communities play a critical role in successful research. In this session, guests will share exciting research advances, detail how people with CF can get involved in clinical trials and introduce a new project that will get the CF community more involved in driving the CF research agenda.
Guests:
Dr. Deepika Polineni, Assistant Professor of Medicine, The University of Kansas Hospital
Heather Hawthorne, Research Manager, Cystic Fibrosis Clinical Research Unit, University of Alabama at Birmingham
David Hansen, father of two daughters with CF, member of the Patient and Family Research Advisory Council, which spearheads the Insight CF Registry Research Project