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CFFC Facebook Posts – August 2017 – Part 2

For our web visitors who do not follow CFFC on Facebook, here are the posts added in the second half of August 2017.

08/16/2017Dealing With Awkward CF Situations – As the saying goes, “humor is the best medicine.” If not medicine, at least good therapy.

08/17/2017 – My Response to Some Gene-Editing Naysayers – Gunnar has an interesting “debate” around the implications of gene editing.

08/18/2017CFF Clinical Care Guidelines – The foundation has issued a chart to help families of newly diagnosed children understand and keep track of all the things that go on in the CF clinic.

08/19/2017AIT Administers First Doses of Nitric Oxide in a Trial Testing Its Ability to Kill Drug-resistant Bacteria – “Nitric oxide, or NO, plays a key role in a broad array of biological functions. When it’s at certain concentrations in the airways, it appears to bolster the immune system’s functioning there.“

08/20/2017Cystic Fibrosis Around the World: Republic of Ireland – Gunnar’s world tour returns to Europe.

08/21/2017How a Lung Transplant Refocused Me on What Really Counts – A new lease on life also provides an opportunity for a new perspective.

08/22/2017Dual Contrast Agents May Allow for More Precise and Color-coded MRI Scans – This discovery may advance the use of MRI scans in assessing the progression of CF.

08/23/2017Living with CF Golf Tournament

Down to the wire!! Please let us hear from you by 8/31 so we can make sure we have enough food for everyone. Here are some highlights:

– Scramble format with shotgun start at 9:00
– Gift bag for all players with a sleeve of 3 golf balls, 10 tees and goodies from Safelite
– Safelite Replace program – buy mulligans and two chances to win a new putter by hitting closest to the pin on hole #2
– One member of each team will win closest to the pin on hole #9 and longest drive on hole #6
– Breakfast goodies at check in and a delicious lunch after play completes

You can check in with the tournament chair at gsmith@cffamilyconnection.org

08/24/2017Scientists discover biomarkers which could lead to better treatments for CF patients – What a combo: conclusive diagnosis and more targeted treatment.

08/25/2017What My Children Taught Me About Explaining Their CF – Talking with kids takes a special talent, but kids can tell you how to talk to kids.

08/26/2017Cystic fibrosis alters the structure of mucus in airways – We all know that CF mucus is thicker, but this study expands that understanding.

0827/2017Supplements and Alternative Remedies are not Substitutes for Medications – There is a lot of good discussion about the value of “alternative” treatments. CFFC does not take a position on this topic, but we feel it is important to present a variety of views on the topic.

08/28/2017BreatheCon Registration Open – Check out the virtual conference organized and operated by adults with CF under the auspices of CFF.

08/29/2017Interactions Between CFTR Protein and Insulin May Contribute to CF, Review Suggests – A broader understanding of the relationship between the CFTR mutation and CF related diabetes.

08/30/2017Sinus Health Post 2 – Diet – Kori continues her story about dealing with CF-related sinus issues.

08/31/2017Clinical Trial Alerts – August 2017 – The alerts on August 30th report the final results of four trials.


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