Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 Thanks, Bruce That gives me a heads up on where to look. I didn't intend in my letter to play down the wonderful work which Leanne and the Fibrosis Foundation do. I'm very grateful for it. Now I must figure out what I can do, or more, what I'm capable of doing besides leaving my vast fortune of $2.49 (after buying oximaters)to Leanne and the Foundation Jack. Re: Fibrosis Help Jack The organization which does the most advocacy for us is Pulmonary Fibrosis Foundation. Specifically too, Leanne does a tremendous amount of Patient Advocacy. Over 90% of the funds they raise go to help with the disease. Also many of the research programs are funded through the National Institute of Health to which she is speaking. http://www.pulmonar yfibrosis. org/home. htm An organization that helps many in need is http://caringvoice. org/ Another organization for pulmonary fibrosis is the Coalition for Pulmonary Fibrosis. They do not use their funds as judiciously in my opinion although they do provide some excellent education programs. Their relationship with one pharmaceutical who has provided the vast majority of their funding and their promotion of that company's trials and the potential of their drugs also gives at least an appearance of impropriety. http://www.coalitio nforpf.org/ The American Lung Association chooses for the most part to ignore Pulmonary Fibrosis. Apparently it isn't a hot enough subject to raise funds and raising funds, paying for fund raising, and then spending the money on direct mail appears to be their major focus. Read their 990 and then decide how you feel on your own. >> I'm not quite sure how to phrase this question, so be patient. In providing oximeters to a few our members made me wonder if there is an organization that supports fibrosis diseases in the sense of raising public awareness, money for research, and perhaps support for those afflicted who do not have the means to get the medical services they need.> There are many groups out there for particular diseases, but I do not know of one for fibrosis. I know about the Pulmonary Fibrosis Foundation now, but prior to becoming a fibrosis patient I had never heard of it or the disease. I respect the work it does, particularly their emphasis on the patient. > What I hope to see is an organization that can raise funds to help those you can't help themselves. > I'm sure some of you can enlighten me on this subject.> Jack> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 Thanks, Peggy, particularly reminding me of Wally's fund raiser. That is certainly something some of us as individuals can do. I tend to be an activist, so I will keep this in mind and search for ways that I can do a Wally. Jack Re: Re: Fibrosis Help My two cents to Jack about information on IPF.. I have been to Doctors that do not know anything about it.. How scary is that. I haven't (in four years) talked to anyone face to face that knew about the disease. Wally from Texas did a fund raiser and raised a NICE sum for the foundation. We all need to do everything we can to get the word out that people are dying from a disease that kills as many as breast cancer every year. Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 Jack, You have a big heart !! xxxooxoo God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Re: Fibrosis Help Jack The organization which does the most advocacy for us is Pulmonary Fibrosis Foundation. Specifically too, Leanne does a tremendous amount of Patient Advocacy. Over 90% of the funds they raise go to help with the disease. Also many of the research programs are funded through the National Institute of Health to which she is speaking. http://www.pulmonar yfibrosis. org/home. htm An organization that helps many in need is http://caringvoice. org/ Another organization for pulmonary fibrosis is the Coalition for Pulmonary Fibrosis. They do not use their funds as judiciously in my opinion although they do provide some excellent education programs. Their relationship with one pharmaceutical who has provided the vast majority of their funding and their promotion of that company's trials and the potential of their drugs also gives at least an appearance of impropriety. http://www.coalitio nforpf.org/ The American Lung Association chooses for the most part to ignore Pulmonary Fibrosis. Apparently it isn't a hot enough subject to raise funds and raising funds, paying for fund raising, and then spending the money on direct mail appears to be their major focus. Read their 990 and then decide how you feel on your own. >> I'm not quite sure how to phrase this question, so be patient. In providing oximeters to a few our members made me wonder if there is an organization that supports fibrosis diseases in the sense of raising public awareness, money for research, and perhaps support for those afflicted who do not have the means to get the medical services they need.> There are many groups out there for particular diseases, but I do not know of one for fibrosis. I know about the Pulmonary Fibrosis Foundation now, but prior to becoming a fibrosis patient I had never heard of it or the disease. I respect the work it does, particularly their emphasis on the patient. > What I hope to see is an organization that can raise funds to help those you can't help themselves. > I'm sure some of you can enlighten me on this subject.> Jack> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 Jack, In Jan. this year I called our local paper and was interviewed and they did a video. I had a few calls on it and I still have people ask if that that was me. I know this group can come up with ways to bring attention to this crummy disease.Anything we can do helps us all. I would give anything to be able to do more. Whatever you can do will be great.The bad part of this is that several celebrities have died of it and we just don't get the recognition this disease needs.It is a mystery. Love and Prayers, PeggyIPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Thanks for your ideas, Peggy. I've spent much of life in theater, newspapers, and public relations/promotion. I'm starting to research fibrosis to learn the history of the disease as a prelude to brain storming (ususally with my brain its another Katrina and all I get out of it is wide spread damage). I would appreciate any clues and ideas for research from members. I get the feeling that we, as patients, must become our own advocates. Jack 79/UIP - IPF/06/05 Maine Re: Re: Fibrosis Help Jack, In Jan. this year I called our local paper and was interviewed and they did a video. I had a few calls on it and I still have people ask if that that was me. I know this group can come up with ways to bring attention to this crummy disease. Anything we can do helps us all. I would give anything to be able to do more. Whatever you can do will be great. The bad part of this is that several celebrities have died of it and we just don't get the recognition this disease needs. It is a mystery. Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Jack, I do know that Jerry has had pulmonary fibrosis for a number of years. Goulet, Marlon Brando, and Evil Knieval all died of the disease. There are not currently any glamorous public figures that have upped public awareness. I think because the causes are so varied, people can't understand what to do to prevent the disease ( I still don't!). I also thought it probably had something to do with smoking when I did briefly read about Goulet's disease. Since I didn't smoke or subject myself to smoky places, I never thought any more about it! I'm all for promoting awareness and hope for early detection. Many doctors are not tuned-in to the symptoms. The big pharmaceuticals may be the only ones with the doctor's ear. Thanks, Jack! You are constantly thinking and in action. I need to do more of the same....no excuses. Subject: Re: Re: Fibrosis HelpTo: Breathe-Support Date: Sunday, June 15, 2008, 8:21 AM Thanks for your ideas, Peggy. I've spent much of life in theater, newspapers, and public relations/promotion . I'm starting to research fibrosis to learn the history of the disease as a prelude to brain storming (ususally with my brain its another Katrina and all I get out of it is wide spread damage). I would appreciate any clues and ideas for research from members. I get the feeling that we, as patients, must become our own advocates. Jack 79/UIP - IPF/06/05 Maine Re: Re: Fibrosis Help Jack, In Jan. this year I called our local paper and was interviewed and they did a video. I had a few calls on it and I still have people ask if that that was me. I know this group can come up with ways to bring attention to this crummy disease. Anything we can do helps us all. I would give anything to be able to do more. Whatever you can do will be great. The bad part of this is that several celebrities have died of it and we just don't get the recognition this disease needs. It is a mystery. Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 , thanks for the information and your thoughts. I was not aware of any public figures dying from fibrosis. I am a good friend of Brando's sister Jocelyn, but she never mentioned it. I am not smoker, never worked around absestos, chemicals, etc., so I too have idiopathic. I prefer the term idiopathetic. You're right about the pharmaceuticals. If they are aware of how big the market is for drugs for the treatment, if not the cure, of fibrosis they would spend the money. Does any one know of how many people there are with fibrosis? Jack Re: Re: Fibrosis Help Jack, In Jan. this year I called our local paper and was interviewed and they did a video. I had a few calls on it and I still have people ask if that that was me. I know this group can come up with ways to bring attention to this crummy disease. Anything we can do helps us all. I would give anything to be able to do more. Whatever you can do will be great. The bad part of this is that several celebrities have died of it and we just don't get the recognition this disease needs. It is a mystery. Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Jack, Figures vary, but mostly I see the 200,000 figure. 200,000 people living with fibrosis at any given time. Approximately 40,000 people die of fibrosis every year which is more than die of breast cancer. The difference though is that more than 200,000 people are diagnosed with breast cancer EVERY YEAR which attracts the attention of the pharmaceutical companies which is why there are treatments for breast cancer. Research dollars are available. We don't have the numbers to attract that kind of financing for research. Even Pirfenidone the current biggie in clinical trials has "orphan drug" status. Which underscores the importance of all of us standing on our chairs and yelling at the tops of our voices. Talk to everyone, email your local newspapers, tv stations, radio stations. Give this disease a voice and a face. We have lost some bright lights in this world to PF. Brando, Goulet, Knievel, Congressman Charlie Norwood. (here is the link to CNN's obit of Brando, Jack. It clearly talks about pf. http://www.cnn.com/2004/SHOWBIZ/Movies/07/02/obit.brando/index.html) We are gradually attracting more attention and more research is being done. But there aren't enough of us for the pharmaceutical manufacturers to associate us with profit so the battle will be ongoing! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive ----To: Breathe-Support Sent: Sunday, June 15, 2008 11:41:40 AMSubject: Re: Re: Fibrosis Help , thanks for the information and your thoughts. I was not aware of any public figures dying from fibrosis. I am a good friend of Brando's sister Jocelyn, but she never mentioned it. I am not smoker, never worked around absestos, chemicals, etc., so I too have idiopathic. I prefer the term idiopathetic. You're right about the pharmaceuticals. If they are aware of how big the market is for drugs for the treatment, if not the cure, of fibrosis they would spend the money. Does any one know of how many people there are with fibrosis? Jack Re: Re: Fibrosis Help Jack, In Jan. this year I called our local paper and was interviewed and they did a video. I had a few calls on it and I still have people ask if that that was me. I know this group can come up with ways to bring attention to this crummy disease. Anything we can do helps us all. I would give anything to be able to do more. Whatever you can do will be great. The bad part of this is that several celebrities have died of it and we just don't get the recognition this disease needs. It is a mystery. Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Thank you, Beth! Great info and a leg up on my education. I don't know what I'm doing, which is my normal state of mind, but I'm confident that something is bubbling in the back of my mind, just as it happens when I'm writing. I'm always surprised at the outcome. Jack Re: Re: Fibrosis Help Jack, In Jan. this year I called our local paper and was interviewed and they did a video. I had a few calls on it and I still have people ask if that that was me. I know this group can come up with ways to bring attention to this crummy disease. Anything we can do helps us all. I would give anything to be able to do more. Whatever you can do will be great. The bad part of this is that several celebrities have died of it and we just don't get the recognition this disease needs. It is a mystery. Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Jack, The best stats I have found is at www.pulmonaryfibrosis.org Good luck with your quest. Let me know if there is anything I can help with. Also remember Bruce, he is most knowledgeable of us all. Steve 60 from WA IPF 2006 Parkinsons 2008 Alzheimers 2008 Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Re: Fibrosis HelpDate: Sun, 15 Jun 2008 08:41:40 -0700 (PDT) , thanks for the information and your thoughts. I was not aware of any public figures dying from fibrosis. I am a good friend of Brando's sister Jocelyn, but she never mentioned it. I am not smoker, never worked around absestos, chemicals, etc., so I too have idiopathic. I prefer the term idiopathetic. You're right about the pharmaceuticals. If they are aware of how big the market is for drugs for the treatment, if not the cure, of fibrosis they would spend the money. Does any one know of how many people there are with fibrosis? Jack Re: Re: Fibrosis Help Jack, In Jan. this year I called our local paper and was interviewed and they did a video. I had a few calls on it and I still have people ask if that that was me. I know this group can come up with ways to bring attention to this crummy disease. Anything we can do helps us all. I would give anything to be able to do more. Whatever you can do will be great. The bad part of this is that several celebrities have died of it and we just don't get the recognition this disease needs. It is a mystery. Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
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