Search results

Tamika has joined us and for one I know she has a big meeting on Wednesday concerning the Medicare Waiver in Florida... I wish good luck to all our Florida members and I know Tamika is a great spokesperson! http://cysticfibrosis.com/tamika-grubbs-rn-help-cystic-fibrosis-community/ Salt and...

Read my blog to find out how it went! http://cysticfibrosis.com/data-will-see-now-cystic-fibrosis-data-valuable/ And watch for more.... Salt and Light, Imogene

Just to let you know...I have been calling Senators. I say "I run a community of members with cystic fibrosis and there is much worry, concern, and sadness put out by this Senate bill. I am hoping they are not voting to throw half our members who are on Medicaid off of healthcare altogether...

I still love my 5 calls app...so I tested something I have been thinking about...Being so upset...I tried different zip codes...I did use Omaha because Senator sesse was on the news just supporting Repeal and Replace...This of course would be terrible for pre existing conditions and 20 million...

Some of you know I will be speaking tomorrow at the https://panagorapharma.com/mobiletech/speakers-2/ Today....I will meet many of the other speakers...This conference is about MOBILE Technology In our survey in 2015 83% of you said YES we want mobile to better care for ourselves. I bring...

I got the previous list from : http://nicolasargy.com/index.php/2017/06/24/from-obamacare-to-trumpcare-falling-off-the-cliff/ But I did call Senator Booker and Menendez yesterday...spoke to someone at Menendez office...and I asked him: "So how many calls are you getting on this healthcare...

Also On the Fence: ALASKA Senator Lisa Murkowski: (202) 224-6665 Senator Dan Sullivan: (202) 224-3004 ARIZONA Senator Jeff Flake: (202) 224-4521 ARKANSAS Senator Tom Cotton: (202) 224-2353 COLORADO Senator Cory Gardner: (202) 224-5941 LOUISIANA...

I call EVERYDAY! This is important...if you have CF or know someone who does, you qualify! The costs of this disease are well above a CAP the Senate bill will put on us. KEEP calling! You don't have to say a lot or don't be afraid to keep saying the SAME thing...Get your friends and...

https://www.cff.org/News/News-Archive/2017/Senate-Health-Care-Bill-Fails-to-Adequately-Protect-People-with-Cystic-Fibrosis/?utm_source=newsletter&utm_medium=email&utm_content=outlined%20the%20many%20ways&utm_campaign=Advocacy%20email%20062217

The Researchers still need four more parents...if you haven't sent your phone number, and you think you qualify...please send it to me now@ info@cysticfibrosis.com Salt and Light, Jeanne

http://cysticfibrosis.com/make-friends-with-your-legislators/ The above link helps you find your senators. This just in from one of our members: The Senate bill is being written behind closed doors. There will be no public debates. No public forum. No bi-partisan approach. They are...

So NOW there is more information about this Research Project...and it is open again! This is directly from the Research Team. "What our client has given us permission to share is that we are looking for children 10 and under who are “taking very minimal medication for their Cystic...

Many of us have read his book about his daughter Alex. https://www.amazon.com/Alex-Life-Child-Frank-Deford/dp/1558535527#reader_1558535527 If you haven't read it, it is highly recommended! And today we remember him as a great sportswriter and man...

The survey is closed now! Thanks All! We received a great response. We needed 30 to respond. We got close to 50 in 72 hours....so they are writing back to you. and I will respond to all! Thank YOU! Salt and Light, Imogene

Thanks for the great response...We have 15 so far! So half completed. If you send in to be part of this study...Thank you! Looking for 15 more.... Salt and Light, Imogene

We are looking for 30 caregivers of children 10 years old and younger in the USA who are willing to share their thoughts about the medication they use to treat their Cystic Fibrosis. v Phone Interviews will be taking place June 26th – June 30th. v All interviews last no longer than 55...

Read how you may qualify from the CFRoundtable newsetter! For instance, in 2007 it became law that when a drug company is registering a clinical trial on clinicaltrials.gov, they are required to specify whether there is an expanded access program (EAP) for the investigational drug available...

http://cysticfibrosis.com/thymosin-alpha1/ This is a blog with a study that may be very hopeful for our community. I have been trying to contact the authors (on LinkedIn) and there is controversy as with so many new drugs and studies for our community. Could this be true? Has it been studied...

I call my congressman EVERY DAy I use five calls. I downloaded it on my phone a few months ago...love that it gives updates every day...congress and justice department Salt and Light, Imogene

PTC Therapeutics' ataluren fails late-stage study in patients with nonsense mutation cystic fibrosis Since we got the sad news that Ataluren failed in the late stage study...we have some good news: Indrepta, a nutritional supplement for non sense mutations, is now on the market! Jim Caldwell...