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I’m on Colistin every other month. I use the Pari nebulizer with it. I did try the E-flow with the Trio aerosol head a few years back, but switched back to the Pari. Although the e-flow was a lot quicker, it felt almost too quick for me. I didn’t feel like I was getting the same benefits...

Sure, send me a personal message with your e-mail address and I'll send you the article. It's in pdf format so it has to be e-mailed as an attachment.

I read this article when it was released and was upset when I saw the results for this mutation. So sorry to hear that your son’s increased sweat test correlated with the other 2 patients in the study with A445E who started Kalydeco. I can only imagine how devastating this was for you to find...

Sorry for the delay- I missed your response somehow. Yes, definitely-- pass on to others with CF I also hope that Vertex would start a specific Expanded Access Program for VX-661 for those with severe disease while waiting for FDA review and approval.

Thought these resources might be helpful to you: https://www.cff.org/Life-With-CF/Treatments-and-Therapies/Lung-Transplantation/Getting-on-the-List/Lung-Transplant-Resources.pdf http://www.esiason.org/thriving-with-cf/transplant-grants Best of luck to you.

Hi fel, I just asked the scholarship committee chair for the USACFA and she said that if the scholarship was given by a different organization/grant then she doesn't believe that is inappropriate.

LAUREN MELISSA KELLY SCHOLARSHIP PRESENTED BY: UNITED STATES ADULT CYSTIC FIBROSIS ASSOCIATION DEADLINE: June 30th 2017 WHO MAY APPLY: Adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor’s degrees Award: $1,500- $2,500 Application and Instructions...

I was so happy to hear this wonderful news last week!! 900 more people will hopefully be breathing easier soon. For those with clinical evidence of residual function who aren’t included in the mutations approved: Just because you have evidence of residual function, don’t assume that your...

Last week, CFRI’s executive director, Sue Landgraf, met with Dr. Janet Woodcock, Director of the Center for Drug Evaluation and Research at the United States Food and Drug Administration (FDA) in Washington DC, to encourage that the FDA expedite the review and approval of new drugs that can...

Ladybird- so good to hear from you! It's been awhile. I'll let you know what I find out about this whole EAP issue. I've been in contact with Vertex's Chief of Compliance and Senior Medical Director that deals with their EAPs. I've also been in touch with the FDA. I'm getting some answers...

Thanks for posting Imogene. I wrote the article:) I just wanted to clarify that it's not the law to provide expanded access but to make information about the compassionate use/expanded access programs offered readily available to the public. In December 2016, President Obama signed the 21st...

From Sue Landgraf, Executive Director of CFRI: A new proposed replacement for the Affordable Care Act (ACA) has been introduced in Congress; the current version has more support than last, despite containing essentially the same provisions detrimental to the CF and rare disease communities...

https://clinicaltrials.gov/ct2/show/NCT03119649?term=glpg&rank=44 ENROLLING | RESTORE CFTR FUNCTION Phase 2a study of Galapagos GLPG2222 in adults with CF › DESCRIPTION: This study is taking place at multiple care centers across the U.S. It will look at the safety and effectiveness of GLPG2222...

Just bumping this thread up to remind people about the webcast tomorrow (4/22):)

There will be a great Webcast on Saturday, April 22, 2017 for the CF community. Important information will be presented on new treatments for CF that are coming soon, health insurance options, assistance programs and strategies for living with CF. We hope you can join us for the whole Webcast...

Thanks for the update! Do you remember if they mentioned how many of the 23 mutations were represented in the study? Also any mention of addressing the many patients with evidence of residual function that have potential to benefit not represented in these trials?

Excellent news! Thanks so much for sharing. Now that they have more data, hopefully Vertex will resubmit application for a priority review of sNDA for Kalydeco for those with residual function mutations (regardless of whether they have DF508 on other allele) so that patients can gain access...

Cleaning between uses: It's recommended that you disassemble parts, soak with soap and water for 15 min and let air dry before reassembling (suggests using distilled water to prevent mineral buildup- but i don't do this) Sterilize once a day by first disassembling parts, cleaning with soap and...

Our Voice is Powerful A note from Mary B. Dwight SVP for Policy & Patient Assistance Programs Cystic Fibrosis Foundation: To our amazing CF Advocates, Thank you for your tireless advocacy, your relentless phone calls, emails, tweets and meetings with your elected officials. As you have likely...

LittleLab, I always appreciate your informative posts. You always put a lot of time and thought into your responses. Your response here is no exception, but I wanted to share my perspective on how valuable shared information can be. It has been a topic that I’ve been very passionate about...