Search results

Oh Danyell, I'm so sorry your cf has progressed so much and I pray that transplant allows you to get a good quality of life back. I checked out your giving site and noticed that someone is matching gifts right now which is awesome. Question...are donations tax deductible for the giver?

Oh Danyell, I'm so sorry your cf has progressed so much and I pray that transplant allows you to get a good quality of life back. I checked out your giving site and noticed that someone is matching gifts right now which is awesome. Question...are donations tax deductible for the giver?

Good luck to Jerry who got the call for his new lungs. 9pm he was awaiting the news of whether or not the lungs were any good. The lungs are in another state.

Good luck to Jerry who got the call for his new lungs. 9pm he was awaiting the news of whether or not the lungs were any good. The lungs are in another state.

thinking of Micah and praying he is feeling better.

thinking of Micah and praying he is feeling better.

Hi Rosie, Welcome to the site! I'm so glad you found us. I was also diagnosed as a child at age 30 month and am now 33. How old are you and where do you live? I live in CT and have a son with cf. Actually its probably better described as CRMS but I want him to get approved for Kalydeco so I'm...

Late Diagnosis of atypical or Sounds like maybe S1235R...

Late Diagnosis of atypical or Sounds like maybe S1235R...

Interesting Kristen. I guess my instructions are old from pre Altera days of the Trio. I thought if you left the head out in a clean state it would clog that it needed to literally "live" in alcohol. Let me ask you this how long do you get out of a head? Mine last around 6 months.

Interesting Kristen. I guess my instructions are old from pre Altera days of the Trio. I thought if you left the head out in a clean state it would clog that it needed to literally "live" in alcohol. Let me ask you this how long do you get out of a head? Mine last around 6 months.

Glad I could help saveferris. You have given so much to our community over the years. I hope you keep coming here and sharing what you find works, doesn't work and is challenging you. To good health in 2012! Cheers :-)

Glad I could help saveferris. You have given so much to our community over the years. I hope you keep coming here and sharing what you find works, doesn't work and is challenging you. To good health in 2012! Cheers :-)

here are a few more. I reviewed the Phase III results (believe it was a pdf) at one time. I'm not finding it again...everything requires a subscription. Here are some good links though and you can probably access from work if your workplace as a subscription to the journal...

here are a few more. I reviewed the Phase III results (believe it was a pdf) at one time. I'm not finding it again...everything requires a subscription. Here are some good links though and you can probably access from work if your workplace as a subscription to the journal...

Not a lot of info here but here's one link... http://www.cendigital.org/cendigital/20110425_sub?sub_id=ELwo55awjyWD&folio=33#pg26

Not a lot of info here but here's one link... http://www.cendigital.org/cendigital/20110425_sub?sub_id=ELwo55awjyWD&folio=33#pg26

Two things: The original manufacturer of the Eflow said not to use antibacterial because of residue issue I believe. I do not steam sterilize the head in the steamer? Do you all? Why do that...isnt' that the point of the alcohol bath we all are directed to leave the head in when it is not in use?

Two things: The original manufacturer of the Eflow said not to use antibacterial because of residue issue I believe. I do not steam sterilize the head in the steamer? Do you all? Why do that...isnt' that the point of the alcohol bath we all are directed to leave the head in when it is not in use?

Hi Craig, You'll want to contact the Scottish Medicines Consortium. Express in writing and voice (IMHO) how important and life saving this drug is for your family. I would send it certified mail to show you want this attended to ASAP! It seems that once the EU medication review board approves...