Welcome to the Pulmonary Fibrosis Foundation!


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WE NEED YOUR HELP BY SEPTEMBER 13TH TO PASS THE PF RESEARCH ENHANCEMENT ACT (S. 3703)

Great News! Senators Patty Murray (D-WA) and Mike Crapo (R-ID) have formally introduced the bi-partisan Senate version of the

PULMONARY FIBROSIS RESEARCH ENHANCEMENT ACT (S.3703)
(PFREA). The PFREA was introduced on August 4, 2010, and was referred to the Health, Education, Labor & Pensions (HELP) Committee. The PFREA authorizes $16 million to establish the first national patient registry for pulmonary fibrosis (PF), establish a national PF advisory board, and call for a national PF education and awareness plan for this deadly disease.

Now more than ever, we need PFF Members, friends and families to be active in advocating for passage of the PFREA in BOTH THE HOUSE AND THE SENATE IN THIS SESSION OF CONGRESS!

Click here to Contact your Senator TODAY to support the Pulmonary Fibrosis Research Enhancement Act (S. 3703)!

Click here to read Senator Patty Murray’s floor statement introducing the PFREA today!

Click Here to Contact your Congressperson to support H.R. 1079 – the Pulmonary Fibrosis Research Enhancement Act.

Thank you for supporting this cause. The difference between success and failure in passing the PFREA this year is going to be the participation of the PF community! With just a few mouse clicks, you can help us make this historic legislative achievement a reality! Thank you for assisting the PFF in this effort!

"In addition to creating a much needed national registry of patients with PF, this Bill's passage would increase the awareness of the challenges associated with the treatment of this disease, and hopefully encourage continued funding for critically important research in this field." - Ganesh Raghu, Director of the Pulmonary Fibrosis Program, and Medical Director of the Lung Transplant Program at the University of Washington Chest Clinic (Seattle, WA)

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ABOUT THE PULMONARY FIBROSIS FOUNDATION

The mission of the Pulmonary Fibrosis Foundation is to find a cure for idiopathic pulmonary fibrosis (IPF) by funding research, advocating for pulmonary fibrosis issues, promoting disease awareness, and providing a compassionate environment for supporting patients and their loved ones. We aim to accomplish this by working with the medical community to drive new research, increase research funding, by representing the needs of our constituents in Washington DC through national advocacy, and by developing caring relationships with patients and their families throughout the course of their disease.

For more information please contact us:


Pulmonary Fibrosis Foundation
811 W Evergreen Avenue Suite 303
Chicago, IL 60642
Phone: 888-PFF-ORG1 (888-733-6741)
Fax: (866) 587-9158
Email: info@pulmonaryfibrosis.org


WHAT'S NEW AT PFF?

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If you would like to receive a copy of the Breathe Bulletin through the mail please contact our office


NEXT YEAR

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YEAR OF THE LUNG

The Pulmonary Fibrosis Foundation is proud to be a partner in the 2010: Year of the Lung.

FUNDRAISING EVENTS

OAK GROVE, MN
SEPTEMBER 10TH, 2010

For the second year the Jim Smith Foundation holds its annual golf tournament to raise money to find a cure for pulmonary fibrosis.

Registration and Warm-up will start at 11:30am with a putting green and driving range available.

There will be a 1:30pm shotgun start for the Four Person Scramble Tournament.

Once everyone is done playing, there will be a Social Hour at 5:30pm that will include a Silent Auction. Dinner and Awards Program will start at 7:00pm.

WALLINGFORD, CT
SEPTEMBER 14TH, 2010

Pulmonary Fibrosis Support Group

A support group to discuss issues critical to the health, outlook and lifestyle of Idiopathic Pulmonary Fibrosis patients and their families

September 14, 2010
1:00pm - 3:00pm

CRANFORD, NJ
SEPTEMBER 18TH, 2010

The Garden State Pulmonary Fibrosis Support Group is sponsoring it's 2nd Annual Garden State 5K Walk/Run on Saturday, September 18, 2010 for a $5.00 Fee. Check-In/Registration starts at 9AM and the 5K starts at 10AM around beautiful Nomahegan Park (1033 Springfield Avenue) in Cranford, NJ.

AMHERST, NH
SEPTEMBER 25TH, 2010

I will always recall in great detail the day I received a call from my mother in April of 2005. Over the years, she had been getting winded walking, while going up the stairs and struggling for breath as she slept at night. She was calling to tell me that the doctors had determined what was causing all of these symptoms. She calmly explained to me that she was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) and was given 2-5 years to live. IPF causes 40,000 deaths per year in the USA, the same as breast cancer and yet many people have never heard of it including my family until my mother was diagnosed. Unfortunately in 2008 my mother, Patricia Vaudreuil, was one of those deaths.

ROCKVILLE, MD
SEPTEMBER 28TH, 2010

To Benefit the Johns Hopkins Center for Pulmonary Fibrosis

No ... it isn’t a golf event t his year!!!
Please join us on Tuesday, September 28, 2010 for an evening of Fun, Friends and Food at Woodmont Country Club Rockville, MD.

Lisa Sandler Spaeth, a wonderful mother, wife, daughter, sister and aunt, died of complications from Pulmonary Fibrosis (PF) on May 1, 2007.

PULMONARY FIBROSIS IS A DISEASE YOU CAN LIVE WITH

It all started in October 2009 when I kept dealing with this dry hacking cough. Eventually I went to the doctor and he said it was a touch of bronchitis. He prescribed meds and I began immediately taking them. In a matter of 4 days things had worsened. I just was not feeling good. I woke up on a Saturday morning and of course we all have to go to the restroom. Well when i sat up I felt really light headed. I managed to get to the restroom and nearly passed out there. But I kept telling myself I had to get back to my bedroom. Well I did get to the bedroom just in enough time to grab onto the foot of my bed and then passed out.

April 2010
“Hi, I’m Bob and I have Pulmonary Fibrosis.”
“Hi, Bob!”
Sounds like a 12-step program. If only it had a success rate like one.
For background, I’m a Marine Veteran, having joined the Corps out of high school in ’64 and volunteered for Vietnam in ’66. (No, I don’t think Agent Orange caused my disease—having studied the issue, I think Agent Orange is overblown and mostly a scam.) Please note there are no Ex-Marines or Former Marines.

Hi, I am Nancy and I am 61-years old and I am here today to explain about pulmonary fibrosis and how it has affected my life in the last few years.

I was seeing a doctor for emphysema for approximately three years, and my symptoms at that time were just shortness of breath. And it didn’t bother me too much on a daily basis as long as I took my medication.

My name is Joan and I was diagnosed with idiopathic pulmonary fibrosis. It was three years ago this coming May that my doctor knew about it.

The first thing down here in Arizona, because I live in another state part time in the summer, I had pneumonia. It started in March and they were giving me three different kinds of antibiotics and I couldn’t shake it.

Hi, I am Dyane. Eight years ago I was diagnosed with pulmonary fibrosis. Most people, when they look up pulmonary fibrosis on the Internet see that it’s usually fatal in two to five years. I am here to share my story with you and how I’ve fought for these eight years and to tell you that there is no expiration date stamped on your behind.

My mother died of pulmonary fibrosis in 1996.

I was diagnosed with PF almost 6 years ago, after having lung surgery to remove some suspicious spots on my lungs. After understanding what my diagnosis meant ( I had never heard of PF prior to that) I spent about three weeks depressed and scared, and telling my loved ones what my final wishes were. I was 45 years old at the time.

One day, I woke up, and realised that I had this day; Today!

I am 31, 32 next week and I have Pulmonary Fibrosis.

Four years ago in April, I became very ill with a kidney stone. The stone was lodged in the tube between the kidney and the bladder causing me to go septic. I was in a coma for two months on life support and also had to be treached. I had kidney failure, respiratory failure, stroke and other conditions.

Please watch video. Thank you.