Companies, CF, Cures, Irony, and the like

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IG

Guest
I've read some 'controversial' posts before on this subject. (Will we ever find a cure for CF? Do companies want us to? etc)
Not controversial per se but interesting in anycase, to hear what others think about that.

When I read <a target=new class=ftalternatingbarlinklarge href="http://news.bbc.co.uk/2/hi/health/4317972.stm">this</a> article it made me think of that.
I think this is very cool, especially since it is a step in the right direction for many diseases. [Not just cervical cancer] It makes me wonder how far our own researchers are getting for CF. I think this shows that maybe we're getting closer perhaps. Since I thought it was particularly interesting and kinda shows how far we're getting research-wise with any disease, I thought I'd post it in the adults section.

Now for the irony part.
I'm participating in the Fall Rush here and doing the whole touring sorority houses and such.
Last night, we got to tour the houses, meet the girls and get a general picture of what it's like what ones we want and everything.
Well of course being interested in what they do for the community I asked the leader of the sorority that I'm interested in what their particular cause is.
When she said CF I came close to laughing my butt off.
Leave it to me to pick that particular sorority.
<img src="i/expressions/rose.gif" border="0">
We'll see how it goes though, I just thought it was funny/ironic.
 
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supermanfan

New member
<img src="i/expressions/face-icon-small-shocked.gif" border="0"> You mean to tell me Cervical Cancer is caused by STDs?
 
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rose4cale

New member
I have another irony to share. Many, many years ago when my husband was in HS he rode his bike a lot. For fun he would join walks and bike rides for different causes. The one he did the most was CF. He didn't know anybody with it, just wanted to be a part of something. As a high school cheerleader, my squad raised money for CF to participate in the state cheerleading competition. I didn't know what it was, but I raised the most money for my squad. Years later, here we are with a son with CF.

The first donation my Mom ever made was to Multiple Sclerosis Society. Guess what she was diagnosed with...yep MS. Weird huh??
 
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supermanfan

New member
That is absolutely amazing... One thing.. I always did the Bowl for Breath when I was a kid... but the CF Foundation doesn't seem to be getting anywhere with their so called research, and they certainly don't help families in need with medical bills. They also don't do anything for kids...

I'm 36 and I use to go to camp as a kid... as I got older the Foundation cut off all help with the camp for the kids... the one week out of the year all kids could be with people with the same problem... and they cut off funding. Our group had to raise money for ourselves, and we were always in the red.

Anyways, the Foundation didn't even help Gentech with money on coming up with Pulmozyme... which by the way was the first drug in 30 years that came out since Mucomist to help loosen up the mucus in the lungs. If you ask me the Foundation board of directors are just sitting pretty collecting money from people that should be used to help families with children with CF. They certainly haven't made any breaking discoveries for over 20 years.
 
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WinAce

New member
The camps were deathtraps. You do NOT intentionally bring together kids who have a strong chance of contaminating each other with deadly bugs. (Even for those who don't immediately decline and die from things like cepacia, just check out the statistics of how they fare years down the line, versus those who are never colonized. Also realize that, a large number of times, such a bug severely limits your options for transplant, the last-ditch "pseudo-cure.")

I'm not that fond of the CF foundation, though.
 
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anonymous

New member
So did you tell them you have cf or just stand there with a weird look on your face. lol

They cut funding for cf camps, at least most of them as far as i know. because of the cross contamination issue. BUT they should have told the cf families. Sure some of them probably knew...but i used to go to camp when i was about 5-7 ...all i remember is there was alot of kids, we all did treatments together and it was alot of fun. Even more so because I didnt have to explain anything and my friends there didnt have to wait on me, we did treatments together. ANYWAY got off track...they never told my family. We never knew why there was no more camp, or that funding was cut. Just that they didnt have them anymore. I partly, or mostly, blame this on my cf center. They could have told us. They didnt tell us really much of anything. You can say we didnt ask but we didnt even know what questions to ask other than what does that med do/for.
Ok sorry again.

Its cool they think they found a cure for cervical cancer. And yes to the poster who asked if it was caused by STDs, i dont know if you were being sarcastic or not. But yes cervical cancer can be caused by STDs...most common one i THINK that causes cervical cancer is HPV humanparvo somthing or nother i cant even pronounce the word much less spell it. Anyway it is a STD that most women dont even know they have until serious problems (like cancer) arise. You maybe thinking (well how do you not know you have an std) I dont know, HPV is a sneaky one not causing much fuss till its to late.

Amanda
 
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anonymous

New member
Ok I didnt even read the article yet till after I posted. So please ignore my last paragraph up there. I was just saying what I already knew. I just heard about them finding this vaccine this afternoon and nothing more than that. So again please ignore that last paragraph.
Amanda
 
I

IG

Guest
stood there with a weird look on my face.

Several of the camps were closed due to MRSA, the one that I went to specifically. A year or so after quitting I cultured MRSA. Given the fact that I had a doctors appointment about once a year back then one has to wonder.. C'est ma vie. That kind of stuff always happens to me.
 
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WinAce

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Mockingbird</b></i><br>The CF Camps may have been deathtraps, but i'll be treasuring the memories forever. =-)<hr></blockquote>

Good for you. The mere *risk* of someone culturing B. cepacia or one of the nasty superbugs there, though, would make me ban the practice of CFers getting together until they were old enough to understand them, at least...
 
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anonymous

New member
Have you bothered to look at all of the treatments the CF Foundation has in the drup pipeline...I would have to say that they are doing a lot with the money that is raised. I sometimes get upset that they don't help the families like MDA does, but if they find a cure, or something comparable, 10 years faster, then I am all for the money going all towards research. Also, take a look at Smart Money magazine...CF Foundation has been in one of the top charities who does great things with their money for a long time...soooooo, I have to disagree with your statement that they don't do anything.<img src="i/expressions/rose.gif" border="0">
 
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Mockingbird

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Have you bothered to look at all of the treatments the CF Foundation has in the drup pipeline...I would have to say that they are doing a lot with the money that is raised. I sometimes get upset that they don't help the families like MDA does, but if they find a cure, or something comparable, 10 years faster, then I am all for the money going all towards research. Also, take a look at Smart Money magazine...CF Foundation has been in one of the top charities who does great things with their money for a long time...soooooo, I have to disagree with your statement that they don't do anything.<img src="i/expressions/rose.gif" border="0"><hr></blockquote>

That is good to know. To tell the truth, I was also kinda wondering what the CF foundation with all their money. I'm glad you posted and cleared that up.
 
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anonymous

New member
<a target=new class=ftalternatingbarlinklarge href="http://www.smartmoney.com/mag/index.cfm?story=dec01-charities
">http://www.smartmoney.com/mag/index.cfm?story=dec01-charities
</a>
Here is an article about the CF Foundation and all their hard work....as you will see, they do pretty well, considering we are a disease that is not well known, unfortunately! For all of you who want the CF Foundation to do more, it is up to us, let's fight. fight, fight to win CF. They are so far ahead of cancer, AIDS, etc. as far as money = treatments goes. Please join me and all the others in this fight!!

<img src="i/expressions/angel_ani.gif" border="0"><img src="i/expressions/puppy_eyes.gif" border="0"><img src="i/expressions/rose.gif" border="0">
 
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anonymous

New member
If I read that chart correctly, CF is rated 40th overall. They have always rated pretty high. I'm thinking in years past they have been higher up the chart than 40th. I don't know if it's because there are way more groups that have been formed over the last few years to give them more competition or what.
 
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anonymous

New member
don't forget about 9/11, the tsunami, and other natural disasters. many charities have taken huge hits because of them.
 
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anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Its cool they think they found a cure for cervical cancer.<hr></blockquote>

it's not a cure for cancer, but a cure to possibly prevent cancer. once you have cancer i don't thing the vaccine would do much.
 
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