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Krickett, I had posted a message earlier and then deleated it thinking it best that I share it with you privately instead. So I just sent you the message that I posted earlier in case you didn't see it.

:) Thought of both of you-- missme and JDsmom: https://www.cff.org/CF-Community-Blog/Posts/2016/An-Inspirational-Message-on-the-Worldwide-CF-Community-Effort-to-Advance-CF-Therapies/ From NACFC: "In an effort to expand the pool of people who can enroll in trials and accelerate drug development...

Summary of second plenary at NACFC: https://www.cff.org/CF-Community-Blog/Posts/2016/An-Inspirational-Message-on-the-Worldwide-CF-Community-Effort-to-Advance-CF-Therapies/ Emphasis on importance of clinical trial participation: "...However, as exciting as it to have the most clinical trials...

CF females have a shortened life expectancy relative to men. Recent research suggest that estrogen plays a role: https://news.vanderbilt.edu/2016/09/15/study-reveals-new-clues-to-cystic-fibrosis-gender-gap/

Great summary of first plenary at NACFC today: https://www.cff.org/CF-Community-Blog/Posts/2016/On-the-Road-to-a-Cure-Pushing-for-Treatments-for-Everyone-With-CF/

Vertex Presents Long-Term Data Demonstrating that ORKAMBI® (lumacaftor/ivacaftor) and KALYDECO® (ivacaftor) Show the Potential to Modify the Progression of CF http://investors.vrtx.com/releasedetail.cfm?ReleaseID=995880

Vertex press release: http://investors.vrtx.com/releasedetail.cfm?ReleaseID=995364 "Vertex has submitted Investigational New Drug applications to the U.S. Food and Drug Administration (FDA) for both VX-440 and VX-152 and expects to start both studies by the end of 2016."

Excellent video that was live streamed today from NACFC. Was recorded and can be viewed anytime at: https://www.facebook.com/cysticfibrosisfoundation Lots of great information.

Please let us know if you don't see a post that you wrote. For some reason, some posts aren't showing up unless you are logged in. As a moderator, I just activated at least 4 posts over the last week that weren't showing. For moderators- log in every once and awhile and compare "What's New"...

Hi Brenda, I’m an adult with CF. I think it’s a great idea to find your son someone his age to connect with online. I’m sorry he’s feeling alone. I think everyone can agree that it helps tremendously to find someone with shared experiences when you’re going through tough times. I’ve...

Wow! Thanks for sharing. This sounds so promising.

Has she tried NeilMed sinus rinse? Maybe something is going on in her sinuses and she has post-nasal drip.

Useful information for those applying for disability: New Social Security rules for Cystic Fibrosis take effect October 7th, 2016. Here's a CF Roundtable blog post by Beth Sufian,Esq. that reviews the changes: http://www.cfroundtable.com/category/cf-and-disability/

Thanks for posting the CF Roundtable article Stephen. I wrote it with the hope that it will help someone (maybe many) as much as Kalydeco has helped me. Missme- there are others besides stephen with one nonsense mutation and another residual function mutation that had a positive response to...

Forgot to mention that CF was brought up in my daughter's science class in 7th grade. The teacher painted a pretty bleak picture of CF (really out of date information- people diagnosed usually not living into adulthood, etc.) Although, she knew that the information on CF was out of date, she...

Great question SooB and great answer by Melissa : ) I actually wrote an article for my clinic's newsletter some years back concerning this issue. SooB, this wouldn’t be as relevant to you since you and your family aren’t as impacted by CF. But I think it’s an important issue that needs to be...

I wish I had the answers to your questions. I can’t figure out why they left out some of the mutations from the Denver study or why they chose to limit the inclusion criteria to specific mutations instead of also including those that had clinical evidence of residual function like you. The...

I’m on Kalydeco and I’m pancreatic sufficient. Yes, you definitely need to take it with fat. It has been shown to increase effectiveness when taken with fat. I usually take with milk and peanut butter. No specific # of grams of fat were ever recommended to me, but I usually shoot for about 10...

That would be wonderful. Fingers crossed. (great detective work!)

Oops- I almost forgot one of the most important ones. This is from the 2014 NACFC. http://onlinelibrary.wiley.com/doi/10.1002/ppul.v49.S38/issuetoc UTILIZATION OF AN “N-OF-1” STUDY DESIGN TO TEST THE EFFECT OF IVACAFTOR IN CF PATIENTS WITH RESIDUAL CFTR FUNCTION AND FEV1 ≥40% OF PREDICTED...