Pulmonary Fibrosis Foundation on Facebook

[Guest guest]

Adrienne and anyone else who wants to know here is a link to the Foudations page on Facebook.

http://www.facebook.com/pages/The-Pulmonary-Fibrosis-Foundation/85835393450?ref=nf

Or you can just search for Pulmonary Fibrosis Foundation on Facebook. It will come up.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, October 5, 2009 2:25:59 PMSubject: Re: Re: Another question

Beth,

What is the Facebook page name?

From: ceesnews <ceesnews (AT) yahoo (DOT) com>Subject: Re: Another questionTo: Breathe-Support@ yahoogroups. comDate: Saturday, October 3, 2009, 6:55 PM

Hi everyone,I just joined your group and hadn't planned to speak up anytime soon but found myself intrigued by your book idea. I've been a professional writer & editor most of my life and have taught college writing classes for the last 10 years. BUT -- like Jack -- except for being placed on disability because of PF/ILD, my life also remains relatively normal so far. The only real information I know is what I've researched myself, & I'm extremely frustrated by it. I don't even understand much of what you talk about on this group site.Even the American Lung Association concentrates mostly on COPD and has very little info about restrictive diseases. The Mayo Clinic, Jewish Center, specializing universities, etc. have more, but it's all helter-skelter & listed under different keywords. I hang on to the little bits of info that those of you who have actually been to these doctors mention on this site. I'm

stuck with a pulmonologist from Kaiser-Permanente HMO who has only seen me 3 times in the year since I was diagnosed. I like him, but I have only 15-20 mins. each time to cram all my questions into.I don't even know whether to tell people I have PF or ILD, but it really doesn't matter because nobody has heard of either of them. Can you tell how frustrated I am?As Jack said so eloquently, "a book by us about us would not only be good for ourselves and others with our disease, but it would also educate the general public and perhaps boost spending for research."If I can do anything to help, please count me in. But I'd be better as an editor also since the only thing I could write about so far is my frustration (which I think is probably worthwhile to add but shouldn't be more than a page or 2).Thanks for letting me vent though. I really do think a book is a wonderful idea. When I sent the form email on HR 1079 to my

Representative, I was surprised to learn that just as many people die annually from PF as breast cancer, and look how many books are out there on that topic. What the heck are we waiting for?I'm not quite sure how to sign off using your method because I don't understand some of the things you include, but I'll give it a try.Cees, 59 (for 2 more days!)S. Calif.PF/ILD 10/08> >> >> >>From: Soulliere <johnsbatik@ ...>> >>Subject: Another question> >>To: Breathe-Support@ yahoogroups. com> >>Date: Friday, October 2, 2009, 11:55 AM> >>> >>> >>My pulmoDR has put me on 40mg of predisone a day...that's two 20's> >>Do you think that's too much??> >> > >>> >>> >>> >>> >><FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1. .yimg.com/ us.yimg.com/ i/mesg/tsmileys2 /50.gif"></FONT>> >>> >>> >>> >>> >>> ____________ _________ _________ __> > >>To: "Breathe-Support@ yahoogrou" <Breathe-Support@ yahoogroups. com>; Breathe-SupportCare givers@yahoogrou ps.com> >>Sent: Thursday, October 1, 2009 9:51:39 PM> >>Subject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> >

>>> >>> >>> >>-- Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >> > >>> >>Dear Joe: > >> > >>We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was ahuge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of

Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update> >>Success on Capitol Hill! >

>>CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates > >>During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill.. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. > >>The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the

bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF..> >>Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Thank you for your important support of H.R. 1079!> >>Sincerely, > >>Mishka Michon, CPF CEO> >> > >> > >> Coalition for Pulmonary Fibrosis> >>Suite F, #227> >>1659 Branham

Lane> >>San , CA 95118-5226> >>> >>info@coalitionfor pf .org > >>> >>> >>forward to a friend | unsubscribe | http://cpf.convio. net/site/ R?i=dt-iO3KxWm78 Q-m4VLJPuw. . > >> > >> > >> > >> >>