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CFFC Facebook Posts – October 2019 – Part 2

10/16/2019Fall A Term: A Lot of Work, A Cold and More Fun – An update on Gunnar Esiaison’s progress in grad school which provides insight on adaptation.

10/17/2019Preventing the Spread of Misinformation – [First of two companion articles.] In our rush to get news, we sometimes put too much reliance on the headline.

10/18/2019Orkambi of Definite Benefit But Risk Evident in Patients Who Can’t Tolerate It, French Study Finds – Applying the advice in the article posted yesterday, it’s important to read this article all the way through to properly understand the information.

10/19/2019Living the Island Life With CF – Here’s another story about how CF impacts – but does not control – the life you live.

10/20/2019Navigating CF: Choosing an Insurance Plan – In the open enrollment period for health insurance, we could all use help making choices that serve us best. CFF has produced an interactive guide to help you with your selection.

10/21/2019Ryan and Martin: a meeting of minds – This article demonstrates that good things can happen when researchers met people who are impacted by the research.

10/22/2019FDA approves new breakthrough therapy for cystic fibrosis – Hot off the presses. An additional CFTR modulator has been approved by the FDA. While this drug is applicable to those with at least on F508del mutation, the trials have shown that this combination works for individuals who did not benefit from previous combo drugs.

10/23/2019 – From CFF Community Voice:

Building on yesterday’s exciting news about the FDA approval of the triple combination therapy, the CF Foundation would like your help prioritizing the topics featured at ResearchCon 2020. ResearchCon 2020 will be focused on CFTR science and research including the newly approved drug and all the research being pursued for those who will not be eligible for the new therapy.

The Virtual Events team is conducting a survey for the second annual ResearchCon, a virtual event for the CF community where participants will learn and discuss with experts in the field about research topics. This virtual event will take place in mid-April of 2020. To identify and prioritize what should be included in the event’s agenda, the ResearchCon work group would like your input on what topics in CF science and research are important to you and should be part of the event program.

To participate in this 5-minute survey, please click on the link below by Sunday, October 27th at 11:59 p.m. ET. You will be asked to select up to 8 topics and rank them by priority, with 1 being the topic of highest priority to you.

Take Survey:  [NOTE: Survey is now closed.]

As you take this survey, please reflect on your own interest and needs of the whole CF community that warrant increased attention when it comes to CF research. We appreciate your perspective and thank you in advance for taking the time to complete this survey!

If you would like to sign up to receive email updates about virtual events and be notified when registration opens, please click here:

10/25/2019Reducing the Risk of Medical Error: Don’t Shy Away From Making Your Voice Heard Inside the Hospital – Gunnar Esiaison reminds us that is essential to be a patient advocate. BTW: We have acceptance from Gunnar, and his “roommate” Darcy, to share their experiences with us at CFFC’s 2020 Education Day event. Stay tuned for updates as the details are worked out.

10/26/2019Benefit planned for Olivia Maniace – Olivia is at the Cleveland Clinic receiving advanced care with the goal of getting well enough for a lung transplant.

10/27/2019 – Transitioning to Adult Care – A look at how CF Canada addresses the transition from pediatric to adult care.

10/28/2019CFTR Function – Many of the articles we link refer to CFTR. The page linked here contains seven articles that can give you a broader understanding of CFTR and the related areas of research.

10/29/2019Regular Exercise Promotes Lung Health in CF by Lowering Adiponectin Levels, Study Suggests – Aside from the standard physical benefits of exercise, this study indicates there may also be a “chemical” benefit.

10/31/2019Balancing Physical and Mental Health – Read some observations from Canadians living with CF about dealing with the mental health aspects of the disease.

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