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Thursday, May 28, 2009

Phase two!

Vertex Pharmaceuticals is developing two oral compounds designed to treat the basic defect in cystic fibrosis—a faulty gene and its protein product, called CFTR. In March 2009, Vertex Pharmaceuticals initiated a Phase 2a clinical trial of VX-809 in patients homozygous for the Deltaf508 mutation. Homozygous means that a person inherited the same gene from both parents. Ryan and I are both carriers of the Df508 mutation so Ben qualifies as a patient for this new drug. VX-809, a CFTR corrector, is designed to increase the concentration of F508del CFTR proteins at the cell surface. Cells that regulate Ben's salt/water ratio make everything they are supposed to make, but what he needs is for those cells to actually function...at this point they don't (causing mucus to be extra thick and sticky) and this medication allows his cells to open up a (chloride) channel allowing his cells to function. The VX-809 drug "pulls" everything to the cell wall, where all it needs is a channel to open up allowing their cells to function too.
I know this is all very confusing and I hope I am getting my facts completely straight. I'm still trying to wrap my mind around all the medical terms! Thank goodness for my RN mom. Basically this new drug could drastically improve lung function. The best part is it's taken orally. The drug is only in phase two (available to only adult CFer's) but once it gets to phase four it will be open for Ben to try. In phase three children (6-11) will be able to try it and in phase five it will be FDA approved! This could take many years but this is a HUGE deal in the battle against CF. Please continue to pray that this drug does what it needs to do. To read more, here is the article link:
http://www.cff.org/research/ClinicalResearch/FAQs/VX-770/

Tuesday, May 26, 2009

Ben's first swim!




Some pictures of Ben in the swimming pool for the first time. He loved it!

Memorial Day weekend


We had a fabulous Memorial Day weekend up at my parents cabin in Arnold, Ca. The weather was beautiful and we took full advantage of the extra help with Ben! Uncle Weston got a chance to hang out and feed his nephew while Ryan and I got to relax and enjoy the fresh air. On saturday I hung out with Ben while Ryan and Weston went golfing. Weston had a fun time driving his brother-in-law around in the cart. All six of us went out to dinner that night to an amazing Italian (my favorite) restaurant and Ben did great except for the explosion in his pants that left him naked for the rest of dinner! It was pretty funny. I put on a bib to give him a bit of modesty. We tried to make church on Sunday but with Ben's added treatments in the morning, it is a struggle so the three of us stayed behind while my parents went on. The day was spent walking around Murphy's doing a bit of wine tasting and shopping. Ben did so well, just hanging out in his daddy's arms (one of his favorite spots!). For dinner we BBQ'd and were able to have a nice relaxing evening. Memorial day was spent in the car driving back to Santa Rosa with Ben sleeping almost the whole way home. Had a wonderful weekend and we appreciated all the time with my parents!

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