For the last couple of months, we have been trying various means of increasing the level of circulating NO in our CF children. NO has been shown to increase the amount of delF508 that is trafficked to the cell membrane, and also may be involved in lengthening the open time of delF508 CFTR.

We tried two means; one way that decreases the recycling of NO in the body, and the other that increases the pool of NO synthesized by the body. The first method is very expensive; the second method is much less expensive.

Since our children with CF are largely asymptomatic, we chose stool characteristics as our endpoint. We tried all permutations: expensive-low dose, expensive-higher dose, inexpensive-low dose, and inexpensive-high dose, and then various combinations of these.

Both methods dramatically improved stool characteristics to the point where their stools became PERFECTLY NORMAL. Their stool were formed, a darker color, and sunk. The difference between the lower and higher dose was observable: the higher dose on both the expensive and inexpensive methods resulted in better stool outcomes.

It is true that together, the two approaches yielded the best results of all. However, there was little difference between higher dose expensive and higher dose inexpensive. And the difference between both together and one separately, though distinguishable, was not enough in our opinion to justify the huge expense of the first approach.

So, to make a long story short, we have adopted Arginine supplementation as a new addition to our CF children's regimen. We wanted to share this exciting new with all of you. We think it is going to make a significant and positive difference in their lives while we wait for some of the Vertex pharmaceuticals to become available through prescription.