Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 ----------------------- Re: Re: Gulet From: dianakay@... Date: Fri, October 26, 2007 12:59 pm To: Breathe-Support Cc: dianakay@... -------------------------------------------------------------------------- , I agree. Oprah has a heart as big as the ocean and has championed many causes. She has great influence and pull in high places. I also thought about . If we could get just one reporter interested in this story. Even if we resorted to the " how come Goulet and not us " ? Make us the underdogs which I feel we are. Makes me think of the movie Miracle on 34th, where little Wood doesn't believe in Santa. Remember the deluge of mail that came into the court? We could do that too. We could do it to , Oprah, Ellen, The view, etc. There is power in numbers. If we could come up with the proper letter with attachments of Baird's, a list of all those celebrities who have died and who are dealing with it now and anything else. Send it to every member here so we could print it out and mail it to multiple people. Make it a big FAT envelope, I think someone would pay attention. Maybe several would. Kay I was thinking Oprah myself as much as I personally dislike her show. > It sure would be an incredible forum. Checking train schedule to Chicago now......could we have an audience filled with all of us on oxygen. Oh, I know its a dream, but of dreams come better realities. I would make one more comment. Leanne is more than " Someone in the PFF " . She is what epitomizes a good strong advocate organization. While she may be involved in efforts in Washington, she is involved daily in helping the humans with the diseases. Sometimes its > information. Sometimes its a listening ear. Sometimes its calling Apria's corporate group because a patient isn't getting what they need. I've chatted with others who are or were formerly with PFF. I know there is a mix like any organization, but I've always felt these were people with a purpose, highly motivated and caring deeply. This is as opposed to non-profit pros who go from organization to > organization and can raise funds for any cause or keep books for any non-profit, but are there for the highest bidder, not the cause in which they most believe. Leanne reflects on PFF in the best of ways and makes me want to know more and get more involved. > > This isn't a disease of numbers, its one of humans. It's nice to know that we have organizations, while small compared to some, that are made of of those who recognize the human element, who care, and who are dedicated to helping. > > >> >> ette, >> >> Someone in the PFF would be me. My phone number is > . Email address is ls_pulmonaryfibrosis@... We list support groups on our webpage www.pulmonaryfibrosis.org. Do we have yours listed? People are always looking for pulmonary fibrosis > specific support groups. >> >> This group and the Pulmonary Fibrosis Foundation were also > represented when the CPF went to Washington. Many of our members sent in letters and their stories to put a face on this disease. We are starting to get some recognition. >> >> We need to cause a ruckus somehow. What about Ellen DeGeneres's > show? What if we all did a letter writing campaign and blasted her show with letters? Or try Oprah again especially since Goulet is in the news. But, we should make it a concentrated effort. I'm open to any and all suggestions. >> >> >> >> >> >> >> Leanne Storch >> Executive Assistant & Patient Advocate >> Pulmonary Fibrosis Foundation >> 1332 N. Halsted, Suite 201 >> Chicago, IL 60622 >> www.pulmonaryfibrosis.org >> P >> F >> >> It takes your breath away >> >> __________________________________________________ >> Quote Link to comment Share on other sites More sharing options...
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