Recent content by samaruba

Hi there CyrilCrodius. That's what I thought too. However, we've upped the dose of Curcumin and Genistein and his sweat test has gone down from 118 to 59mmol/L in February this year (2014). At the same time patients with double delF508 trying the supplements, notice improvements as well. So it's...

I'm so glad you've found it! I know there must be so many people around that could benefit from this, but I just don't know how to reach them. There are more an more people trying this combo and so far each and every one notices effects withing 24 hours or so. I'm very excited and very...

Hello all, With this post I'm hoping to reach patients with gating, residual function and conductance mutations. We have found a combination of two food supplements that have a synergistic effect on CFTR and can potentiate CFTR up to therapeutic levels (around 50%). This effect is backed up by...

I've read a newspaper article, where the guy with CF taking Kalydeco says that at first he didn't notice a big difference but when he started taking it with very fatty foods, like lots of bacon, he improved. That might help?

I usually put in in the straw of a juice box (I'm Dutch. Not sure how you call those boxed juices for kids). I use a straw to take it out of the salt shaker, holding it horizontally and than carefully poor it into the straw in the juice box. It's gone with the first sip he takes and he doesn't...

mama Scarlett, I know how you feel.... shocked and very confused. I just heard it 5 days ago..... My head is still spinning.... I too was happy for all with G551D and hoping they'd be close to finding something that would work for my son and ...boom.... I get an email 5 days ago with this...

mama Scarlett, I know how you feel.... shocked and very confused. I just heard it 5 days ago..... My head is still spinning.... I too was happy for all with G551D and hoping they'd be close to finding something that would work for my son and ...boom.... I get an email 5 days ago with this...

Okay, the link is strange... I didn't know...sorry...! Otherwise just Google: Van Goor S1251N VX770 For me it is the second link that comes up on Google. It's a PDF file. I believe it's a poster presentation from the CF conference in Anaheim. So if all else fails, go to that website and...

Okay, the link is strange... I didn't know...sorry...! Otherwise just Google: Van Goor S1251N VX770 For me it is the second link that comes up on Google. It's a PDF file. I believe it's a poster presentation from the CF conference in Anaheim. So if all else fails, go to that website and...

Two days ago I received the message of my life! It seems that VX770 will probably work on some other mutations than G551D as well. Mostly gating mutations. On of which my son has...... <img src="i/expressions/face-icon-small-blush.gif" border="0">)<br>This is copied out of the abstract...

Two days ago I received the message of my life! It seems that VX770 will probably work on some other mutations than G551D as well. Mostly gating mutations. On of which my son has...... <img src="i/expressions/face-icon-small-blush.gif" border="0">)<br>This is copied out of the abstract...

Hi, My name is Sam, I have a 3 yr old son with CF. When I learned of my son's diagnosis, I became a member of a CF newsgroup called Sharktank, that was started over 14 years ago. I am posting this message because we have decided it is time to share the enormous amount of information we have...

Hi, My name is Sam, I have a 3 yr old son with CF. When I learned of my son's diagnosis, I became a member of a CF newsgroup called Sharktank, that was started over 14 years ago. I am posting this message because we have decided it is time to share the enormous amount of information we have...

Hi, My name is Sam, I have a 3 yr old son with CF. When I learned of my son's diagnosis, I became a member of a CF newsgroup called Sharktank, that was started over 14 years ago. I am posting this message because we have decided it is time to share the enormous amount of information we have...

Hi, My name is Sam, I have a 3 yr old son with CF. When I learned of my son's diagnosis, I became a member of a CF newsgroup called Sharktank, that was started over 14 years ago. I am posting this message because we have decided it is time to share the enormous amount of information we have...