Livestreaming of the North American Cystic Fibrosis Conference (NACFC)

North American Cystic Fibrosis Conference
Opportunity: Register Now for the Livestream Content
Dates: NACFC will be held October 18-20
The North American Cystic Fibrosis Conference (NACFC) brings together researchers and health care professionals from around the world to discuss the latest in cystic fibrosis research, care, infection, treatment, and drug development.
You can explore conference sessions along with the experts! Join us online for three livestreamed plenaries, follow-up Facebook Live Q&As with the speakers, and additional livestreamed workshops and symposia that were hand-selected by members of the CF community, including members of Community Voice. You will find the schedule for these sessions below. The plenary sessions are the major keynote sessions that are presented to all attendees. Each plenary will be followed by a Facebook live Q&A session with the plenary presenters.
During the third plenary session, keep an eye out for Community Voice Melanie Abdelnour, who will be sharing about the importance of partnering with her care team.
Additionally, you will have access to view the content from all other sessions where speakers have consented to share their presentations through the sync-to-slide feature 6 weeks after the conference. Stay tuned for more details!
Register now to livestream the plenaries, workshops, and symposia.
Thursday, October 18, 2018
  • Advancing Basic Science Toward a ‘One-Time’ CF Cure – 09:45 am – 11:05 am MT
  • Pro/Con: Current Debate in Pulmonary Treatments – 09:45 am – 11:05 am MT
  • Controversial Practices – Helpful or Harmful – 02:00 pm – 03:25 pm MT
  • Healthy Habits: Promoting Physical & Mental Health Through Sleep, Exercise, & Nutrition – 02:00 pm – 03:25 pm MT
  • Plenary 1: Improving Outcomes of Infections in the Age of CFTR Modulators – 04:30 pm – 06:00 pm MT (6:30-8 ET)
  • Facebook Live: Infection Research: Mission Possible,  6:30 pm MT (8:30 pm ET) 
Friday, October 19, 2018 
  • Plenary 2: Anti-inflammatories & Mucociliary Clearance Therapies in the Age of CFTR Modulators – 9:00 – 10:00 am MT (11:00 – 12:00 pm ET)
  • Facebook Live: Glad You Brought It Up: Mucus and Inflammation, 12:15 pm MT (2:15 pm ET)
  • The Changing Face of Pulmonary Exacerbation Treatment – 10:30 am – 11:55 am MT
  • Progress & Promise of the CFTR Modulator Pipeline – 10:30 am – 11:55 am MT
  • Novel Approaches to Modulate CFTR – 02:00 pm – 03:20 pm MT
  • Nutrition Research – 02:00 pm – 03:20 pm MT
Saturday, October 20, 2018 
  • Plenary 3: Partnering: The Oldest New Idea to Improve CF Care – 9:00 – 10:00 am MT (11:00 – 12:00 pm ET) 
  • Facebook Live: Howdy, Partner! A Live Q&A, 12:15 pm MT (2:15 pm ET)
  • CF Airway Inflammation – 10:30 am – 11:50 am MT
  • Progress in CF Pulmonary Disease – 10:30 am – 11:50 am MT
  • Pain Management in CF – 02:30 pm – 03:55 pm MT
  • ‘Adulting’ With CF – 02:30 pm – 03:55 pm MT
If you have any questions, please email communityvoice@cff.org.
Best,
The Community Voice Team

Patients Will Test Digital Platform to Manage CF-Related Diabetes (CFRD)

By Janet Stewart

Attain Health will partner with DarioHealth, a digital health and big data solutions company, to test its Dario Engage platform to monitor blood sugar levels in cystic fibrosis (CF) patients with CF-related diabetes (CFRD). Attain Health provides integrative health coaching for CF patients.

CFRD is an unusual form of diabetes estimated to affect some 30,000 CF patients in the United States and 70,000 worldwide. Experts say that the hyperglycemia (high blood sugar levels) seen in CFRD patients results in higher rates of bacterial lung infections, and an increased risk of death.

“Effective diabetes management in cystic fibrosis patients is critical, as there is a sixfold increase in mortality among cystic fibrosis patients who have diabetes as compared to those who don’t. The increased risk of mortality from lung infections is correlated with hyperglycemic events,” Kat Quinn Porco, founder of Attain Health, said in a press release.

The three-month pilot study will include real-time tracking of 12 patients with CFRD using the Dario Engage digital platform, which includes a blood sugar monitoring device that transmits readings to the clinic. Attain Health will pay for access to the Dario Engage Dashboard to monitor participants.

The app is designed to help clinics detect blood sugar trends that could lead to disease progression. Disease management is also expected to be improved by DarioHealth’s ability to provide health education content via the app.

“We are very excited to move forward with DarioHealth in exploring the benefits of digital health solutions for patients living with cystic fibrosis. We chose to work with DarioHealth because of their platform’s patient-centric approach, ease of use, real-time actionable data, and their very favorable reputation in the diabetes market,” Porco said.

The companies plan to jointly present preliminary findings at the North American Cystic Fibrosis Conference Oct.18-20 in Denver. Final results are expected in December.

Attain Health plans to obtain grant money for continuous use of the DarioEngage program with up to 200 patients a year.

“By piloting this study in partnership with Attain Health, DarioHealth is taking a leadership position in addressing CFRD by deploying what we believe are the best digital health management tools on the market today. This agreement and pilot study mark DarioHealth’s foray into chronic disease treatment markets that overlap with and expand beyond the treatment of diabetes, our company’s first treatment indication,” said Erez Raphael, president and CEO of DarioHealth.

Original article here.

USACFA History: How a group of adults with CF helped create a community without computers, email, or the internet

By: Laura Mentch

Our story begins with Lisa McDonough, a young woman with CF. Lisa wanted to find a way for people with CF to connect with each other and share their thoughts and strategies related to living with CF. In 1989 she singlehandedly produced 4 issues of Roundtable, a newsletter for adults with CF. Lisa knew that she benefited from talking to people with CF on the phone or in CF clinic and she wanted other adults with CF to benefit from connecting and sharing information about living with CF, medications, and staying healthy. Continue reading USACFA History: How a group of adults with CF helped create a community without computers, email, or the internet

Live Stream the North American CF Conference Tomorrow for Free!

The North American CF Conference (NACFC) provides a collaborative and educational forum for all CF professionals. The educational elements of the meeting program are targeted to physicians, nurses, research scientists, respiratory therapists, physical therapists, nutritionists, social workers, and pharmacists. Continue reading Live Stream the North American CF Conference Tomorrow for Free!

My Five Takeaways from #NACFC2016

I had a dream last night, and in that dream the Limp Bizkit classic song, Nookie was on repeat for some reason. I have no idea why; I haven’t heard that song in about 12 years. Needless to say I woke up pretty jacked up and motivated to get sh*t done before the Packers game this afternoon. Continue reading My Five Takeaways from #NACFC2016