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CFFC Facebook Posts – February 2019 – Part 1

For those who do not visit Facebook, here are the posts to the CFFC page for the first half of February.

02/01/20198 Essential Items for Long Hospital Stays – This list may be familiar to hospital “veterans” but could be useful to those who do not have a lot of hospitalization experience. The last item on the list (cash for coffee) is exactly why CFFC includes a stipend in our hospital help packets.

02/02/2019ReserchCON – The CF Foundation is offering a virtual conference for CF families interested in the current state and future of CF research. This CFFC calendar entry contains links to program details and registration.

02/03/2019Link Found Between P. aeruginosa Infection and Disease Severity in CF Patients, Study Reports – An interesting subtext: the absence of Pseudomonas may be related to the absence of a F508del mutation.

02/04/2019For The First Time in 15 Years, I Didn’t Suffer a Pulmonary Exacerbation – Gunnar shares his ideas on what goes into improved health.

02/05/2019Hypertonic Saline Activates Neurons that Contribute to Airway Surface Liquid Production in CF, Study Suggests – More basic science that can improve CF treatments.

02/06/2019Coping With the Loss of My Brother to CF – This blog piece not only talks about coping with loss, but also provides a glimpse of how much the CF world has changed over the last few decades.

02/07/2019Poor Diet Quality Linked to Body Fat Distribution in Adults with Cystic Fibrosis, Study Shows – Were you ever told to eat anything just to keep your weight up? This study suggests good diet choices improve CF outcomes.

02/08/2019Adulting with CF – A few Canadians share their experience when transitioning from pediatric to adult CF care.

02/09/2019Overcoming Fear – This blog from Gunnar Esiaison is really more about find your source of motivation than beating a fear.

02/11/2019Research Partners Work to Simplify, Improve Assessment of Lungs for Transplant – This work is aimed at increasing the supply of viable donor lungs for transplant.

02/12/2019How I Use the CF Patient Registry to Inform My Care – It is said that information is power. Here are some suggestions on how to gain power from data gather by the CF Foundation.

02/13/2019 – Improving CF care survey – A survey opportunity has been announced by the CFF Community Voice Team with the following message:

This is a transformative time in CF, and the needs of our community vary greatly depending on factors such as an individual’s age, health status, and treatment options.  We would like to learn more about what is important to you. 

We are asking clinicians, researchers, people with CF, and their families and loved ones to share their perspective on the shifting CF landscape. Through this survey, we would like to hear your views on the challenges you currently face and what you are concerned or excited about for the future, especially as it relates to CF care. Your insights will inform how we meet the evolving needs of people with CF over the next five years, and how we work with others to improve the health and lives of all people affected by this disease. We will share key themes that emerge from this survey in the next few months.

Please share your perspective now by completing this 15-minute survey by Tuesday, February 19 at 11:59 p.m., ET.

Thank you for helping us to keep sight of what matters. We appreciate your input and look forward to working together to shape the future of CF.

02/14/2019New company Recida to Focus on Developing Therapies Against Antibiotic-resistant Bacteria – We know how important it is to overcome resistant infections. It’s good news that a company is being formed to focus on a solution.

02/15/2019Good news on Organ Donor Consent – Ireland is taking steps to increase the supply of organs for transplantation.

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