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CFFC Facebook Posts – May 2019 – Part 2

05/16/2019 – So, do you need a little extra incentive to join us at CFFC Education Day? Well, check out the picture.

This is the stuff our keynote speaker, Jerry Cahill, has provided as door prizes for our attendees. It’s not too early to register. Go to:

05/18/2019Paul Widmeyer: A Life Changing Relationship – A look at the complexity of love in a relationship that includes CF.

05/19/2019Poor Oxygen Conditions May Promote P. aeruginosa Infection Over Other Pathogen in CF, Study Suggests – It seems that, while we’re fighting Pseudomonas, it is fighting its competitors.

05/20/2019 – In case you missed the CFFC table at Great Strides on Sunday, you need to see president Karly Schuhart’s winning smile. Oh, and by the way, don’t forget to register for CFFC Education Day, June 8th. Go to:

05/21/2019Watching My Parents Grow Older – Here is an aspect of CF longevity that you may not have thought about before.

05/22/2019Potential cystic fibrosis treatment uses ‘molecular prosthetic’ for missing lung protein – Some times, “new” discoveries come from looking at an existing treatment in a different way. The discovery covered in this article may help individuals living with CF regardless of their specific mutations.

05/23/2019Andrew W. Eve Memorial Scholarship – With one school year coming to an end, it’s time to think about paying for the next school year. Scholarships are available for a range of college studies through the Andrew W. Eve Memorial Scholarship. The application form is available in the linked article.

05/24/2019My Message to the St. Louis University School of Medicine Class of 2019: Listen to Your Patients! – It’s quite possible that you would deliver a message similar to Gunnar Esiaison’s if you had the opportunity to speak to the graduating class of a medical school.

05/25/2019Specific Peptide May Lower Antibiotic Resistance of P. aeruginosa Bacteria, Study Reports – This study describes another means to attack Pseudomonas.

05/26/2019Focus Group Opportunity – The Cystic Fibrosis Foundation is committed to finding a treatment for the underlying cause of the disease for every person living with cystic fibrosis. With the potential approval of a triple combination therapy, it is more critical than ever to have the voice of those who do not believe they will benefit from CFTR modulators, including those with two nonsense and/or rare mutations.  We will be hosting focus groups to better understand the perspectives of these individuals, including their views on research to develop new treatments. If you are interested in joining a focus group or sending in email feedback on this topic, please fill out this brief interest survey. [NOTE: The survey is now closed.]

05/27/2019Tenacity – Jerry Cahill writes about an important attribute for those living with CF. [Remember, Jerry will be the keynote speaker at CFFC Education Day.]

05/28/2019Ask a Case Manager: What are Co-Pay Accumulators and Should I Be Worried? – This blog from a CF Foundation Compass case manager discussed an change in insurance coverage that may have a significant impact on your budget.

05/29/2019Mutation in CFTR Gene Affects the Body’s Inner Clock, Mouse Study Suggests – While you may not want to know that there are more problems associated with CF, the knowledge may help you cope with these other factors. So, take a look at the news relating to sleep.

05/31/2019One week to go – We’re excited that our big event – CFFC Education Day – is just a week away (June 8th). You can get the details of the event, and find a link to the online registration, on the CFFC calendar linked here. We look forward to seeing you and engaging in learning conversations.

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