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Swescott: You probably have this info, but in case it helps, here is a list of the accredited centers in New York state: The Cystic Fibrosis Foundation provides funding for and accredits more than 110 cystic fibrosis care centers and 55 affiliate programs nationwide, including 96 programs...

Hi and welcome Swescott! So sorry you are in limbo on a CF diagnosis. Were your son's sweat tests performed at an accredited CF center? If so, after the borderline results, what did they suggest? In my opinion, 2 borderline results would be sufficient enough to move on to genetic testing...

Thanks for the update Alex. While 10 is quite low, I understand that you still have concerns. Did you meet with your doctor today? Hoping it was a productive visit! Take care, Autumn

Hi and welcome Ryan! So sorry your friend is having a rough time, but it sounds like she's lucky to have you for support. :) What a bummer that her port isn't working. :( Peripheral IVs are certainly no fun. Are they changing the IV's every 24 hours as a policy? Or are the veins...

Hi and welcome Alex, I'm sorry that you are experiencing all of these symptoms. As you have read, it is possible to have a "normal" sweat test and later be diagnosed with CF via genetic testing. So in relation to that, a couple questions come to mind, the first being whether or not the sweat...

Hi Alfie!! Congratulations on the baby news, how exciting!! :) When we first found out I was pregnant, my CF doc had me consult with a high-risk OB, but then I was allowed to stay with my regular OB throughout my entire pregnancy. The high-risk OB and my CF doc consulted each other about all...

Hi Suzie, So sorry that you did get the answers you were looking for last time you posted. Unfortunately, if you were told she is the only one with this mutation it's unlikely you'll find anyone here with firsthand knowledge. We do have some pretty dang knowledgeable people around here who...

As far as the patient advocate's reasoning.. Like Ethan mentioned, the live blogger reporting on the hearing said that her questions seemed to demonstrate that she did not understand how the drug works. In addition, he said something to the effect that it appeared she just "didn't get" the data.

Amen Jricci! Thanks Aboveall and Jeanne for leading the effort! The CF community should be proud. Here's an article I came across on FB newsfeed (thanks Liza!)a bit ago: http://www.bizjournals.com/boston/blog/bioflash/2015/05/analyst-patients-were-key-to-vertex-panel.html An excerpt from...

So sorry Cam! I'll be thinking of you! Sounds like they've got you on a pretty good cocktail of meds for now, unless some other infection turns up. Hopefully you turn around quickly. Keep us posted! Autumn

Exactly what I was going to say, just let them know when you get there that you have been testing at home and have concerns about hypoglycemia. That way they can be prepared, and it will put your mind at ease. The results don't take long to come back, but they may make you wait to hear the...

Hmmm, interesting. Makes me want to started nebbing mucomyst again. :) I just gave it up a few years ago during the shortage, was becoming too hard to find so finally gave in and made the switch to Hypersal. The new drug sounds promising (like mucomyst, but better), just too bad it is so...

Yes, this: "Morrato admits to being swayed by patient testimony, that stuff matters" And WHAT on the patient advocate being the only "no" vote?? Is she serious??

Wow! Very cool, thanks so much for the link!! I'll definitely keep my eye on for their vote later!

Hi Ryan, Because it's late at night, I'm guilty of just skimming the replies of this thread. I normally read thoroughly before respond, so I apologize if this is redundant or even irrelevant. I know that you're really seeking relevant info quickly, so I wanted to mention that with many...

Thanks to Jeanne and everyone who makes this site what it is! :) And to Lauren, who made me feel so welcome here all those years ago, and shared her talents with all of us! Autumn

Hi and welcome Falling! I am really late to the ballgame here and don't feel I have much to add as there have been many great responses! Also not so sure I qualify as "young". Lol! I just wanted to say when my husband and I were dating and still getting to know each other better, I WANTED...

Thanks Dank, would be awesome to have more info on members mutations! Autumn

Whoo hoo, way to go! Thanks for everything! Autumn

Believing, I take out curse words where I see them. That doesn't mean we catch all of them. As moderators, editing posts when necessary is our one of responsibilities. We try to keep swearing off the forums. We would never edit something because we personally "do not like it". If you'd...