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Hi Michelle- They’ll review Tezacaftor/Ivacaftor (VX-661 studies) for those ages 12 years and older with DDF508 and those with one copy of DF508 and one copy of a mutation that is expected to have residual function (including a few splice mutations) I'm not sure if February 2018 is when they’ll...

Having never been through the process, I can't offer any words of wisdom, but please know that I'll be thinking of you and hoping that the call comes quickly and that the surgery and recovery go as smoothly as possible for you.

Vertex Announces Acceptance of its Applications for Review of the Tezacaftor/Ivacaftor Combination Treatment in People with Cystic Fibrosis by the FDA and EMA -FDA grants Priority Review of the application and sets action date of February 28, 2018- -Applications supported by positive results...

This is such a beautiful reflection. I've had the exact same thoughts and feelings since taking my first dose of Kalydeco on November 6, 2014. Along with the happiness and renewed sense of hope that comes with the realization that your body is responding to this breakthrough medicine, comes the...

I hope she does well with it. I remember how exciting that first dose was. I was so hopeful that it would work, but yet so worried that it wouldn’t-- lots of mixed emotions. I know you had concerns because you weren’t sure how to know it was working because she doesn’t have symptoms. I’m not...

I thought I'd tag everyone in this tread to make sure they are aware of lastest Vertex press release: http://forums.cysticfibrosis.com/showthread.php/181886-FDA-approves-Kalydeco-for-5-residual-function-mutations?p=1083508 LunaFaith- it looks like you'll be trying Kalydeco soon! Please give us...

Thanks for always keeping us informed of latest news Aboveallislove! This is wonderful news!

Here's some more information regarding Expanded Access Program offered by Vertex that I think you are referring to: Program designed for individuals 2 years or older with specific residual function genotypes and severe lung disease meeting the following criteria: • One of 23 residual function...

Rx for health care reform: bipartisanship article-- http://www.northjersey.com/story/opinion/contributors/2017/07/21/rx-health-care-reform-bipartisanship/497788001/

Just when we thought we could relax... From CFRI: Just when we thought we could relax, the Senate has announced that it will vote on an undetermined form of health care legislation as early as tomorrow! Of the four potential plans, two are the most likely to be considered: The Obamacare Repeal...

Thanks for sharing Aboveallislove! These are incredible results! Happy tears:) Summary of Results: In the Phase 2 clinical trial of VX-440 in combination with ivacaftor and tezacaftor (VX-661), the 18 participants in the study with a single F508del mutation who received the 600 mg dose of...

triples15 no need to apologize. It's difficult not to feel defeated and negative. One democratic senators summed it up perfectly: "It's a direct assault to the most vulnerable people in our society." The fact that this is even being contemplated makes you doubt the morality of our society...

kgfrompa- I think this might be the class you're referring to. I wish I saw this post sooner so you didn't have to miss another class. :( http://www.cysticfibrosisidaho.com/wp-content/uploads/2017/05/MBSR-June-2017.pdf

Jeana- Your letter is excellent. Thank you for writing it. I would keep the part about working and retiring. The way you personalized it makes it more powerful. Autumn suggested writing to those Senators who were on the fence and may be more influenced by our letter writing. Here are the...

Jeana- Your letter is excellent. Thank you for writing it. The way you personalized it makes it powerful. Autumn suggested writing to those Senators who were on the fence and may be more influenced by our letter writing. Here are the names and contact information of those Senators that seem...

Sorry about that--I probably should have started a new thread to avoid any confusion with the time lapse in between proposed bills. Triples- I think it’s a great idea to find out who’s “on the fence”. Does anyone know this information? Please post if you find out. I’ll look into it too...

Senate to release proposed health care bill tomorrow (thursday) with vote before 7/4 From CFRI: URGENT CALL TO ACTION! SENATE TO RELEASE PROPOSED HEALTH CARE BILL TOMORROW (THURSDAY) WITH VOTE BEFORE JULY 4th BREAK! It appears that the proposed legislation will incorporate provisions that are...

Hi Simba, I just reached out to CFF to ask them, but haven't heard back yet. But their prior webinars have been recorded. I'd still register for it even if you can't make it, that way they will e-mail the link to the recording to those who registered but didn't attend. At least, that's how...

From CFF: Join us tomorrow night for a webinar on the American Health Care Act and how it could impact people living with cystic fibrosis. Learn how you can get involved and advocate for our community. The U.S. Senate is expected to vote on this legislation as soon as next week so we hope you...

Shay- Sorry to hear she's having a difficult time. If you decide to stay with the Colistin you may want to contact CFF Compass. They can help with insurance issues. They may be able to talk to your specialty pharm. to get them to agree to cover Trio metal head every 3 months...