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Aug

CFFC Facebook Posts – July 2019 – Part 2

07/16/2019Different CFTR Potentiators Bind to Same Flexible Spot on Protein, Study Finds –This study looked at how drugs like Kalydeco actually work which could lead to the development of other, more effective treatments.

07/17/2019Focusing on the Now Helped Us Survive Losing Our Daughter to CF – This blog addresses an issue that is always in the back of our mind.

07/18/2019CFFC Annual Financial Report for 2018-19 – We have published the financial report for CFFC’s fiscal year that ended June 30, 2019.

07/19/2019Building Trust In the Relationship with Your CF Clinic Team – In this blog, Canadians living with CF share their perspectives on building a trust relationship with their CF care teams.

07/20/2019Pancreas-on-a-chip Expected to Shed Light, Help Find New Treatments for CF-related Diabetes – Using this new approach, scientists have confirmed that a faulty CFTR gene is directly related to CF-related diabetes. That knowledge can be the basis for developing effective treatments.

07/21/2019My Colonoscopy Wasn’t so Crappy! – Gunnar Esiason’s blog is a little crass, but he addresses an important topic.

07/22/2019Specialized Care Helping Cystic Fibrosis Patient Breathe Easier – This page is basically an ad for the adult CF center in Denver; however, since it features Kori Tolbert Doherty, CFFC’s past president, it’s worth sharing here.

07/23/2019‘Everything’ Will Never Be Perfect, and That’s OK – This blogger reflects on the peril of pursuing some sort of “ideal.”

07/24/2019What Overnight Summer Camp Taught Me About CF – Before the attention to the potential for cross-infection, a summer camp for kids with CF was organized by the Rochester CF center. This blog post demonstrates that the same benefits can be derived when CF kids participate in camping experiences with kids who don’t have CF.

07/25/2019CF Foundation 2019 CF Health Insurance Survey – Here’s an opportunity to help shape the approach the CF Foundation will take regarding health insurance for the Cf community.

07/26/2019 – Managing the CF Care Team & Caregivers’ Relationship – Last week we shared thoughts from the Canadian CF community on building trust relationships with your CF care team. In this follow up, community members offer their perspectives on managing that relationship.

07/27/2019Just 7 weeks to go! – CFFC’s Living with CF Golf Tournament is just seven weeks away. Sign up to join in the fun. (And if you don’t golf, you could sponsor a hole.)

07/28/2019Orphan drug – You have probably seen references to “orphan drug status” in news about CF treatments. This Wikipedia entry gives general information about the designation and the commercial implications.

07/29/2019Accepting the Bumps in the Road – People living with CF know all to well about deferred plans. This blog talks about the patience required to avoid set backs that can result from trying too hard.

07/30/2019Risk – As a follow up to yesterday’s post, here is Gunnar Esiaison’s take on accepting the risk associated with changes in your routine.

07/31/2019We Can’t Always Carpe Diem – We’re on a roll. Here is a third view on the attitude required to deal with the challenges presented by CF.


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