Live From NACFC: New Sessions Just for You

This year at the 30th Annual North American Cystic Fibrosis Conference in Orlando we have three sessions just for the online cystic fibrosis community.

| 4 min read
Emily-Dulcan-headshot
Emily Dulcan
Emily-Dulcan-NACFC-Community-Sessions-Featured-Rectangle

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 Riedy, 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

There will also be a live stream of the three plenaries and select workshops. Register for the broadcast here.

Share this article
Topics
North American CF Conference
Emily-Dulcan-headshot

Emily is the online community events lead at the CF Foundation. She comes to the Foundation after serving for three years as digital director at the Peace Corps. Emily has worked as a digital strategist for nonprofits, agencies and political campaigns, including three years with Organizing for America. In 2006, Emily earned a master's degree in cross-cultural journalism from the Missouri School of Journalism. She loves traveling, reading, exercising, cooking and eating well.

Recent Community Posts
Children With CF and COVID-19
Blog | 5 min read
How Finding Other Mothers to Share the Good and Bad of CF Helped Me
Blog | 7 min read
After a Lung Infection and a Pandemic, I Finally Ran the Boston Marathon
Blog | 6 min read

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.