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CFFC Facebook Posts – July 2021 – Part 2

07/16/2021Darcy’s Blog: Our IVF Process – Timeline, Cost, and All the Nitty Gritty – As Paul Harvey used to say, “The rest of the story.” Here is Darcy Esiason’s report on their IVF experience. Her detailed and straightforward explanation is a good guide for anyone considering the process. It will also give you an idea of how great our Education Day program will be.

07/17/2021Acknowledging My Trauma Has Made Me a Better Advocate – Hopefully, your path to advocacy won’t be as traumatic as it was for this blogger.

07/18/2021Researchers Probe Targets to Reduce Mucus Production – Rather than thinning mucus, this research sought to regulate the production of mucus.

07/19/2021Education Day Registration Reminder – We have had some early responses to Education Day registration, but we would love to have more.

07/20/2021 – A small molecule induces readthrough of cystic fibrosis CFTR nonsense mutations – This research is another step toward the “no one left behind” goal in treating CFTR mutations.

07/21/2021“Government restrictions may have ended – but please keep those of us who are clinically extremely vulnerable in mind” – This item comes from the UK so some of the details differ from the condition here in New York. That said, the underlying message is relevant – and worth sharing broadly.

07/22/2021Education Day 2021 FAQs – Can’t make up your mind about joining Education Day? Maybe this quick Q&A will convince you that it will be a “can’t miss” opportunity.

07/23/2021The Benefits of Being Sick – It can be hard to “look for the silver lining; however, this blogger suggests that it is healthy to think about positive instances in an otherwise difficult time.

07/24/2021Cystic fibrosis-related diabetes (CFRD) and cognitive function in adults with cystic fibrosis – Have you felt a little off in your memory? This study explored the relationship of CF and CFRD to cognitive abilities. As with many studies, one conclusion is that more research is needed.

07/25/2021CF Survey: Educational Info About Cannabis, CBD Lacking – With the legalization of cannabis in New York, questions about use in the CF community are sure to arise. This survey shows that the answers may not be easy to come by.

07/26/2021Measuring what matters to people with CF in clinical trials – every time – CFTR modulators have changed a lot of things. This articles points to the changes that need to be made in health measures.

07/27/202111 Haikus to Help You Laugh About CF – Every once in a while, you should take a break from the serious CF topics.

07/28/2021One week to Education Day – CFFC will hold its first ever virtual Education Day one week from today – Wednesday, August 4th. You have to register to join in, but registration is free and easy. Just click the link below. You can also find the details on Education Day at https://cffamilyconnection.org/education-day-2021-faqs/.

07/29/2021Couple’s Goal: Health Equity for Black and Minority CF Community – Getting proper attention in the medical community can be challenging when you have a rare disease. The difficulty is exponentially greater when the medical community assumes you can’t have that rare disease.

07/30/2021Why it’s #NotTooMuchToMask – Despite differences in health care across the pond, this advice is relevant everywhere.

07/31/2021Assessing My Risk Tolerance with the Delta Variant – Two reasons read this blog from Gunnar Esiason. First, it is view of the evolving COVID environment from a CF perspective. Second, it will give you a preview of the straight talk you’ll hear from Gunnar on Education Day (August 4th). Register for Education Day at: https://zoom.us/webinar/register/WN_7e4E9Ll3TJC6hCc6pH1z7A


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