Re: Re:How to find local area IPFers

[Guest guest]

bill

the group at penn is a transplant support groupI have gone to it a couple of times

they usually have a speaker

the rest of us talk informally before and after the meeting

lots of PFers, but also other diseases that need transplant

the december meeting is a holiday party

that's where i met people who had their transplants 5, 10, 15 years ago

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re:How to find local area IPFersTo: Breathe-Support Date: Wednesday, September 9, 2009, 7:35 PM

Hi, again...

There's a seminar in burg next Monday for IPFers which I got all the information on today today. I can't make it but sent a note back explaining the value I think a local support group would have. I got a reply right away from of the Coalition for Pulmonary Fibrosis saying she's sending me a kit on how to get one started, and if I want to do it, they can notify people in the area and let them know about it, and nobody would be violating any HIPPA laws. One of the things I learned today, and I'll have to verify it, is that if you're over 65, and already drawing Social Security, that you also may be able to draw Disability. I was complaining to the guy at the gym how much Penn Tower Hotel costs and he said his Disability pays for all that. I'm 66 and he's older than I am. These are the kinds of things that many people may not be aware of that a support group of people in the same boat could

share, I think. So I sent her a list of a lot of the little towns around here and I'll let you know what happens.

And there is still a support group at UPA, the U. of Penn, that meets once a month. A lady there named Jeanne, I believe, knows all about it. As many times as I already drive down there, I'd like to avoid another trip a month, which stirred my interest in starting up a local group.

Bill C. IPF 10/08

Did everybody realize today is 09/09/09?

N.E. PA