Tuesday, April 1, 2008

The Big Fucking News

April Fools.

No seriously, just kidding. I have news, but I thought that this is all very interesting that it happens to be April Fool's day and ya'll are still very interested in my big news.

A couple weeks ago the CF Foundation (cystic fibrosis foundation, for those of you who live under a rock, and I know there are several), announced BIG NEWS!!! and I rolled my eyes and skimmed the article because it was about the drug VX770, and I know for a fact that they JUST started phase 2 clinical trials, and in my mind there was no fucking way that there could be any data. Beyond there being no data, I was convinced it was a ploy to get more funds because Great Strides is next month. I knew for a fact that the "big news" they were all over was just sad news because it would only work on 15% of the CF population - the people with the "G" mutations.

I went to a meeting last night, and just when I thought the CF Foundation could teach me nothing more about my disease, I learned more. I also totally and completely lost my shit and cried and cried. And cried. That's how big my big news is. I cried lots and lots - like the drunk for two days sob. Although I was able to stop this sob and go to dance practice afterwards.

There are over 1,400 different gene mutations that cause Cystic Fibrosis. Yeah, that sucks. I learned the three main types are "G" mutations, "X" mutations, and "delta 508" mutations. I am a double delta girl. It's the most common gene mutation, and I gots me two of 'em.

So they told us that in TWO weeks of phase two clinical trials patients had an average increase of 10% in lung functions - That's a big deal, but not my big fucking news. I was sitting there, crying, because I knew it wouldn't help me.

THEN they told us that VX770 might still help the delta 508 mutations a little, but we won't know until either phase three or when it's on the market. So now I'm crying because maybe the CF Foundation DOES love me, they just can't figure out how to get it to work.

Now HERE is the BIG FUCKING NEWS:
Vertex, the creator of VX770, has another drug, VX809 that is in phase one clinical trials. THIS drug works on the the delta 508 mutation.

This is where I really lost my shit, because in a couple years, we could have something to FIX WHAT IS WRONG.
(Don't worry, X mutation-ers, the CF Foundation has you covered, too - there's a drug, PTC 124 that will help you... but I didn't research that because I don't have that mutation.)

Here is the site for the VX809.

So, to sum this up, for me this means that my CF MIGHT NOT KILL ME!!!

I could go back to school, and get a job, and have a family, and live a real life like a real human bean.

...the only problem is the CF Foundation doesn't have enough dough to keep the research going - which is why we need donations more now than EVER. It's real guys, this thing might not have to kill me.

so DONATE, fools.


Love,
Carla

7 comments:

redrover189 said...

YAY! Congratulations, Carla! I know how exciting this must be for you! Keep us updated on what happens :)

Princess Talana said...

I totally did not know about the second drug! I was happy for the advancement, but a little sad as I too am a double delta girl (it sounds like a sororiety). Going to go read that link now!

Dancing65Roses said...

we should be a sorority lol

Toni said...

i really need to figure out what my mutation is. i have no clue.

Matt Todd said...

A local news station here in Minneapolis just did a story on that this evening. Sounds promising. One of my docs was interviewed and they had video of him using a vest which was mildly amusing. Anyways the story and video are at:http://www.kare11.com/sports/sports_article.aspx?storyid=503029

Chris S. said...

Awesome! More birthday dances! :)

Anonymous said...

Hi

Sorry, I'm French... I'm not CF but my third daughter is. She is also a double delta.

Of course I heard about those drugs (VX770, PTC124...), but did you know about MIGLUSTAT, which is now under trying in Spain (phase 2 trial), and which could be suitable to treat dF508 mutation ?

Hold on... "Bon courage"

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