The Pulmonary Fibrosis Foundation
The PFF is devoted to funding and supporting new research, providing educational materials to the medical and lay communities, obtaining Congressional support to increase funding for research, and offering support groups, information and reassurance.
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Kim L Johnson

Kim L Johnson
During this time of giving thanks, I wanted to make sure I said thank you for the work your Foundation and Doctors are doing to fight PF. I am 34yrs old, and believe that I would not be alive today without the help of Dr Ralph Panos, who is on your medical board, and the work that the Foundation does. Over 7 1/2 yrs ag...o I was diagnosed with PF and did not feel or believe that I would live to see 40. 3yrs ago I was lucky to find Dr Panos and am happy to report that I can not remember the last time I felt this good, and I am still living free from oxygen assistance! I now have hope, and when my husband and I talk about retirement I truely believe that I will live long enough to be there with him. THANK YOU FOR ALL YOU DO! You really are making a difference in the lives of those living with PF!Read More

about an hour ago · Report
The Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation
Kim, thank you for your inspiring and hopeful words. Here at the Foundation, we see heros each day who are LIVING with the disease and you will provide hope to the patients reading this Facebook page! Keep up the positive attitude. Please know that we will do all we can to help raise awareness and fund research that we hope will one day find a cure for pulmonary fibrosis. We really appreciate your kind words and wish you and your family a Happy and blessed Thanksgiving.
28 minutes ago
The Pulmonary Fibrosis Foundation

The Pulmonary Fibrosis Foundation Pulmonary Fibrosis Foundation on WNBC Channel 4 New York Nightly News with Charles Scarborough at 7 p.m. on Monday, November 23rd 2009

Nightly News with Charles Scarbourogh
Length:4:47
2 hours ago
Kimberly Stasa
Kimberly Stasa
it's so sad to hear these words "there's no cure for this." :(
about an hour ago
Barbara Murphy
Barbara Murphy
I am so sorry I missed the show. We need all the publicity we can get as this disease is so little known. Thanks!
46 minutes ago
MaryAnne Purtill
MaryAnne Purtill
Glad they were able to get the exposure
10 minutes ago
The Pulmonary Fibrosis Foundation

The Pulmonary Fibrosis Foundation Attention East Coast Folks.....Dr. Dan Rose and Krysten Knievel (Grandaughter of Evel Knievel) will be interveiwed TONIGHT November 23 on the New York Nightly News with Chuck Scarborough...The live interview segment can be viewed on New York Nonstop and can be seen on Channel 161 on Time Warner Systems. The program starts @ 7PM EST. Check your cable listing for the channel in your area.

Yesterday at 9:59am
Kasee Sims Crosby
Kasee Sims Crosby
I'll have to watch that!!
Yesterday at 1:07pm
The Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation
Hello Corrie, it is NBC
Yesterday at 1:37pm
Kenneth Overman
Kenneth Overman
Any chance it will go nation wide?
4 hours ago
The Pulmonary Fibrosis Foundation

The Pulmonary Fibrosis Foundation
Exciting News! The Pulmonary Fibrosis Foundation's President, Dr. Dan Rose and the grandaughter of dare-devil Evel Knievel, Krysten Knievel, will be interviewed by Dr. Fred Feit on the Doctor Radio show on Sirius and XM Satellite Radio.
When: Wednesday, November 23 6a - 7a EST Sirius Channel 114 and XM Channel 119
Cal...l in with questions to: 877-NYU-DOCS (877-698-3627)
You can sign in for a free 7-day trial: http://www.sirius.com/freetrial/registerRead More

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Source: www.sirius.com
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Yesterday at 9:35am
Eileen Donnelly Coleman Touvelle

Eileen Donnelly Coleman Touvelle I just found out that my mother's brother was diagnosed with pf this passed week...my mom passed away on 10/7/09 from pf. Please all family members that has someone with this disease or has lost someone to it keep on top of things. If you have any of the symtoms get it checked out.

Sun at 7:12pm · Report
The Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation
Eileen, so sorry to hear about your mother, and now your uncle. Your words are sincere and true. Thank you for sharing them. We have support groups that can be rather helpful at http://health.groups.yahoo.com/group/Breathe-SupportGrief/. If you would like any information please contact our office at 312-587-9272.
Yesterday at 9:29am
Hannah

Hannah On May 12, I lost my grandpa to pulmonary fibrosis, which was just a couple days before my birthday... it was so hard on me and my family. I love and miss him so much, it's just not the same without him. My prayers go out to the familes that have loved ones with this deadly disease.

Sat at 5:04pm · Report
The Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation
Hannah, losing a loved one can be devastating. Our thoughts are with you and your family.
Yesterday at 9:14am
Susan

Susan A year ago today, my husband and best friend, Marty DeWan, died of IPF. I love him. I hate this disease.

November 20 at 6:34am · Report
The Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation
Susan, although our loved ones are not physically with us, they will always live on in our memories. May you find comfort in his Peace.
November 20 at 8:01am
Cheryl Mcgee
Cheryl Mcgee
susan, i know how u feel. its horrible. im hoping my husband makes it to transplant
Sun at 5:56pm
Janet Baker

Janet Baker My mom lost her battle at 11:08 pm Thursday at Baylor in Dallas...I am so confused right now...She out lived the disease bu 3 years...She was such a fighter but she said she was so tired and finally she is at rest...I love her very much and I am missing her so...I wish no one would have to go through this and for the one that are my prayers are with you and your family. RIP Mom (Judy Fagg age 63)

November 20 at 1:26am · Report
The Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation
Janet, so sorry for your loss. It is exteremly hard to see a loved one pass. It can be helpful to share your story, and and talk to others. Here is a link to our support group: http://health.groups.yahoo.com/group/Breathe-SupportGrief/
November 20 at 7:57am
Janet Baker
Janet Baker
I will tell you this, she tried everything out there...Meds that cost up to $25,000 a month and we found nothing that would work. She was being evaluated for a lung transplant but she just gave out before that could happen..

She tried so many experimental treatments and sometime they would do worse than good but she would say that maybe by her ... Read Moredoing it, it would keep someone later from suffering like she did.

Very brave lady and maybe one day they can use what she went through to help or cure someone.
November 20 at 8:57pm
Amy Lege Gaspard

Amy Lege Gaspard
my mom will be 53 saturday and was diagnosed just this past week with PF. it started off as pneumonia and just got worse. she was in ICU for almost 3 weeks and is currently still in the hospital. im shocked at how someone can be for the most part healthy and within weeks become so sick. they are wanting to send her to ...rehab (nursing home). does the rehab usually take long before they can go back home?? my prayers are with anyone dealing with this disease. god bless you all!!Read More

November 19 at 3:37pm · Report
The Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation
Amy, this can be a very confusing time. Newly diagnosed patients can often be overwhelmed by the information they find concerning pulmonary fibrosis. If you would like a packet of information, please send your address to pulmonaryfibrosisinfo@yahoo.com or you can call us at 312-587-9272, we are always happy to talk to anyone.
November 20 at 7:42am
Barbara Lynn
Barbara Lynn
I feel your pain. My husband had been to the dr. on a Thursday and was told his lungs sounded better and his PFT test was 2 points higher than 3 months before. By the next Sunday he was in the hospital with double pneumonia and in ICU by tuesday. On the resperator Wednsday. He lasted about 17 days. This is a terrible disease. There needs to be more information out there about it. I was lucky to find the PFF web site and get some information. Good luck with your mother.
November 20 at 6:56pm
Amy Lege Gaspard
Amy Lege Gaspard
thanks barbara. my prayers are with you.
Sat at 9:41pm
The Pulmonary Fibrosis Foundation

The Pulmonary Fibrosis Foundation

Krysten Knievel 1/25/2010 - Power Women Magazine on Blog Talk Radio
Source: www.blogtalkradio.com
My grandfather Evel Knievel could jump over seven Greyhound buses but he could not beat pulmonary fibrosis says Krysten Knievel who today is an outspoken advocate for the Pulmonary Fibrosis Foundation. ...
November 19 at 10:27am
View all 7 comments
Claudette Zaccardi
Claudette Zaccardi
This is wonderful that PF foundation has gotten Krysten Knievel to be an outspoken advocate. Perhaps,this will get the information out there.
Sat at 6:12pm
Julie
Julie
Jerry Lewis also has Pulmonary fibrosis, I have always wondered why he has never been an advocate on this disease.
Sat at 9:58pm
The Pulmonary Fibrosis Foundation

The Pulmonary Fibrosis Foundation Chase Bank is donating $5 million to a select number of nonprofits based on how many people vote for them. We need as many people supporting us as we can. Please vote today, every click counts!

tinyurl.com
Source: tinyurl.com
November 19 at 7:54am
Kara

Kara My mom just went to the pulmonary doctor yesterday and she wants my mom to do a lung biopsy to see if she has PF. Is the the usual way to diagnose? She has some scar tissue around her lungs, very fatigued, trouble breathing and the crackling noise the doctor can hear when she listens to her breathe...I just don't want to jump to any conclusions yet. Any help would be great...thanks!

November 19 at 5:26am · Report
View all 5 comments
Kara
Kara
Sorry for your loss Eileen. My mom tested negative through a blood test for scleroderma, but the doctor feels like she has it and is suppose to see an autoimmune doctor next week. Have you experience any hair loss? My mom's hair is coming out and I read that is one of the symptoms. Did your mother participate in any studies?
November 20 at 5:13am
Eileen Donnelly Coleman Touvelle
Eileen Donnelly Coleman Touvelle
Kara...I am not experiencing any hair loss at this time. My mom did not participate in any studies. She did go to a highly rated facility...Temple Lung Center. Apparently the pf was very mild, if that is ever possible, and at the beginning of this summer it just started getting worse, kind of like a cancer spreading. We rushed her to the ... Read Morehospital in August while we were at the South Jersey shore and she just got progressively worse. Finally came up from the shore on 9/16 to see the doctor. By the time my nephew got her home she was so bad he and my sister had to rush her to the hospital...she was in respitory distress. Was in the hospital for 1 1/2 wks. Then the decision was made to move her to a "skilled" facility to work on getting her strenght back so she could go home. She lasted there about 2 1/2 days and was rushed back to the hospital. It was decided that there was nothing else the drs could do for her. She came home to be with her famiily. Thank God we all had that time with her. Iknow this is more info than you need right now...just wanted to let you know how things can go. All the friends that I have met on this sight...it's nice to know there is support out there for our families. We all have special angels watching over us.
November 20 at 5:35am
Raja Mirza

Raja Mirza Helloo can any budy tel me abt lungs fibrosis..?

November 19 at 1:33am · Report
The Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation
Pulmonary fibrosis is a general term for scarring of the lungs. Basically, the lung tissue starts to scar preventing oxygen from entering the blood stream. If you send your address to pulmonaryfibrosisinfo@yahoo.com we can send you a packet of information. If you have any other questions, please do not hesitate to call us at 312-587-9272.
November 19 at 7:48am
Brenda Shaffer

Brenda Shaffer my husband was diagnosed with pulmonary fibrosis july 2001 . This is one nasty disease . we are currently on 6 liters oxygen 24-7 . pretty much confined to bed now .

November 18 at 5:23am · Report
The Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation
Hi Brenda, Please know the the Pulmonary Fibrosis Foundation is here to support you and your family in whatever way we can. Are you aware that we offer an online support for people who are taking care of those with pulmonary fibrosis? Here's the link: http://health.groups.yahoo.com/group/Breathe-SupportCaregivers/. Sometimes it helps to "talk" to ... Read Moreothers that are going through a similar situation. Or you can always call our office to talk with someone. 312.587.9272. Is lung transplant an option for your husband? Let us know what we can do for you and your family.
Leanne Storch
Executive Director
November 18 at 2:55pm
Cherie Smith

Cherie Smith just wondering if anyone has heard of " Serracor-NK"for the Pulmonary fibrosis and does it do any good, thanks

November 18 at 2:04am · Report
The Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation
Hi Cherrie: We get many questions about Serracor (Serra RX 80, etc) and similiar compounds. These are purported to be "anti-fibrotic" agents which would theoretically prevent or reverse fibrosis. There are "anecdotal" reports of individuals improving on this type of therapy. It would be wonderful if these types of therapies did work, ... Read Moreunfortunately there is absolutely no research done by reputable investigators to support this. Presently the best therapy is to maintain a "healthy lifestyle" with moderate exercise, good diet, rest, and appropriate respiratory therapy, It is important that one has a physician with expertise in pulmonary fibrosis. Additionally patients with pulmonary fibrosis should consider enrolling in clinical trials (www.clinicaltrials.gov)
November 18 at 9:47am