Re: Hi Owen

[Guest guest]

Hey, Leanne the MOD,

Talk about it ...... we are here to listen. It helps me cope to talk about it. I believe most people think they shouldn't talk to us about our illness, or maybe they don't want to take time to listen. But, when someone asks ...I am so relieved to talk about it. I sometimes end up crying, but that is o.k. too.

Thanks again for this site,

Joyce> Hi Leanne (hope I spelled it right)> I have IPF but I'm not on O2 yet so I guess you'll have to fogive > me for being such a dope. It's only occured to me tonight that you're > the moderator/helper for this group. Or at least I think so. > So forgive me for not saying hi to you personally. You run a great > site of great value to us. > There has to be something of a wearing effect on you as there is on > the sufferers of the disease and their loving families. So be good to > yourself.> And tho I know some people might find it off-putting if you > identified yourself as the moderator and resource you might consider > using some kind of title with your name - something like Leanne the > Mod. It'd probably help people like me who aren't really that fast on > the up-take with all our other concerns. Just something to think > about. > Love Ya Owen > PS - you'll have to tell me if I'm right or wrong about any of this > stuff!> > > > > >

[Guest guest]

Leanne

With your PFF hat on.

I guess that what upsets me the most is no one outside of our selves knows about PF IPF.

What is being done to bring this to the public attention so we can feel that more research will be done on this and a possible cure.

My Dr is very knowledgeable in the stem cell area. He indicated that it might be possible to regenerate lung tissue using that process. But we all know that stem cell work can not be done because we might have to take blood from the umbilical cord of an infant. That blood will just be flushed down the drain anyway, but we can't use it.

Could you please tell us what is being done in research?

Dave

Hi Owen

Dear Owen,

Thanks for the chuckle this morning.

I like Leanne the Mod., however, I'm a low profile kinda person. I'm here behind the scenes. Also, living with IPF sometimes, honestly, I don't feel like "talking" about it. I LOVE the fact that there is so much support going back and forth on this site. That's what a support group should be. I also work for the Pulmonary Fibrosis Foundation and have a wealth of resources at my fingertips. So, if anyone needs any information or ?, please don't hesitate to get in touch with me either by e-mail or by phone.

Leanne Storch the Mod

Executive Assistant & Patient Advocate

Pulmonary Fibrosis Foundation

1332 N. Halsted, Suite 201

Chicago, IL 60622

P or Freillyov wrote:

Hi Leanne (hope I spelled it right) I have IPF but I'm not on O2 yet so I guess you'll have to fogive me for being such a dope. It's only occured to me tonight that you're the moderator/helper for this group. Or at least I think so. So forgive me for not saying hi to you personally. You run a great site of great value to us. There has to be something of a wearing effect on you as there is on the sufferers of the disease and their loving families. So be good to yourself. And tho I know some people might find it off-putting if you identified yourself as the moderator and resource you might consider using some kind of title with your name - something like Leanne the Mod. It'd probably help people like me who aren't really that fast on the up-take with all our other concerns. Just something to think about. Love Ya Owen PS - you'll have to tell me if I'm right or wrong about any of this stuff!

Yahoo! MailUse Photomail to share photos without annoying attachments.

[Guest guest]

, If I was a betting man, I wounldn't hold my breath on the stem cell research. Haven't you read about the huge scandal on that research, the doctor in Korea who started this false hope of regeneration through umbilical blood was caught fixing the tests and all his research was a scam. It sounded good on paper, but the reality was that it can't be done. SteveDAVID ADAMS wrote: Leanne With your PFF hat on. I guess that what upsets me the most is no one outside of our selves knows about PF IPF. What is being done to bring this to the public attention

so we can feel that more research will be done on this and a possible cure. My Dr is very knowledgeable in the stem cell area. He indicated that it might be possible to regenerate lung tissue using that process. But we all know that stem cell work can not be done because we might have to take blood from the umbilical cord of an infant. That blood will just be flushed down the drain anyway, but we can't use it. Could you please tell us what is being done in research? Dave Hi Owen Dear Owen, Thanks for the chuckle this morning. I like Leanne the Mod., however, I'm a low profile kinda person. I'm here behind the scenes. Also, living with IPF sometimes, honestly, I don't feel like "talking" about it. I LOVE the fact that there is so much support going back and forth on this site. That's what a support group should be. I also work for the Pulmonary Fibrosis Foundation and have a wealth of resources at my fingertips. So, if anyone needs any information or ?, please don't hesitate to get in touch with me either by e-mail or by phone. Leanne Storch the Mod Executive Assistant & Patient Advocate Pulmonary Fibrosis Foundation 1332 N. Halsted, Suite 201 Chicago, IL 60622 P or Freillyov wrote: Hi Leanne (hope I spelled it right) I have IPF but I'm not on O2 yet so I guess you'll have to fogive me for being such a dope. It's only occured to me tonight that you're the moderator/helper for this group. Or at least I think so. So forgive me for not saying hi to you personally. You run a great site of great value to us. There has to be something of a wearing effect on you as there is on

the sufferers of the disease and their loving families. So be good to yourself. And tho I know some people might find it off-putting if you identified yourself as the moderator and resource you might consider using some kind of title with your name - something like Leanne the Mod. It'd probably help people like me who aren't really that fast on the up-take with all our other concerns. Just something to think about. Love Ya Owen PS - you'll have to tell me if I'm right or wrong about any of this stuff! Yahoo! MailUse Photomail to share photos without annoying attachments.