Pulmonary Fibrosis Foundation

This group of folks is very supportive and informative. It has been a blessing to me. I have never met any of them. We share with one another and some folks have had that symptom and helps us with info. Most people, drs. Included haven't heard of PF or IPF. I was fortunate to get a very informed dr. He was recommended by the PFf from the group head. Dr. Ganesh Raghu at the University of WA. I was called the very next day. It can be scary if you don't have a good dr. The first one told me I had 2-3yrs. To live. I am in my 11th year.and.....planning for lots more!

I had the opportunity to learn about the Pulmonary Fibrosis Foundation from its outstanding Chief Operating Officer Patricia Tuomey. The organization serves many purposes including educating the public about this terrible disease, being a support system for those who suffer from it, and advocating for research grants and legislation. I am extremely impressed by the PFF staff and its commitment having worked with them on an organ donation project. The effort by volunteers and people who have pulmonary fibrosis to share their stories with the public is very moving. I would urge anyone who is looking at supporting a charitable organization that makes excellent use of their resources to strongly consider the Pulmonary Fibrosis Foundation. Their work is first-rate.

I began my journey with the Pulmonary Fibrosis Foundation as a caregiver and family member. We discovered the PFF after my father's battle with this horrible disease ended...but my experience and relationship with this fabulous Foundation was just beginning. Since his passing, I have helped to organize several awareness events and fundraisers...but most notably am proud of have worked with the PFF on their Annual Fundraiser. My husband and I are not millionaires, but we do what we can to support the mission of the PFF. We encourage our friends and family to do the same...and we see our hard-earned dollars going towards raising awareness, support, and ultimately a cure. We are proud to help the PFF in any way we can! And encourage so many others to do the same!

Hello from Sweden, I was diagnosed with IPF 9 years ago at the age of 44. I've spent many years struggling on my own - and was so happy when I came across PFF. It gives me a lot of inspiration , I follow every move you make on Facebook. It is a shame I didn't know about PFF last year or I would have come to the summit in chicago, but hopefully I will come to next years summit. Keep up the good work, regards from Stockholm.

I was diagnosed with Pulmonary Fibrosis September 2009. It has been a real battle as it is for most of us! The support from the PFF and the people with this disease is unlike any support I have ever seen. Each individual is cared for. If one rejoices we all rejoice and if one mourns we all mourn. We are more than a foundation in my opinion . We are FAMILY! Family that truly cares and works hard to bring awareness and support to all we meet.You are never truly alone when you are in the midst of the members of the Pulmonary Fibrosis Foundation! We laugh and we cry together. We call one another on the telephone send cards to one another and we pray for each other as well as a cure for Pulmonary Fibrosis. The PFF educates us and tells us of any new things we are not aware of. Many people work Very hard to do different jobs within the PFF but its for our common good and welfare! I do not know where I'd be today if it had not been for the support and kindness I have received. I know someone will always be there to help in any way they can and that I can count on these people to carenot just about the disease but for the person and all they go through! They have been a great encouragement for me! Thank you so much! Donna White

I was diagnosed in July and the PFF has been there from the beginning and have given me hope and great information. The people are loving and caring. I would recommend it to everyone.

It was ten days before Christmas when I had an open lung biopsy that brought the diagnosis of Pulmonary Fibrosis. Feeling alone and scared as I read the hits that came up when I Googled it, I felt a sense of reassurance when I found that there was a "Foundation" dedicated to this specific cause. Through them I've been able to connect through social media to a number of other people whose lives have been changed by this dreadful disease. It is heartbreaking when we lose one of our "family" members and we can't help but wonder if we're next. Knowing that the PFF will carry on in research and searching for a cure helps me sleep at night. I know that if my son or grandson should present with this, they'll have more options than I've had. I also believe my mother had been misdiagnosed when she died in 1974. Our symptoms were too eerily familiar. At least I got a correct diagnosis and have benefitted from supplemental oxygen, etc. I can't imagine how lonely and despondent I'd be if I hadn't come across this wonderful Foundation and touched base with the professionals and volunteers on their staff. May God Bless them mightily for their efforts and their commitment to excellence. ((Hugs))

I have been priviledged to have had the opportunity to provide HR Consulting support to the Pulmonary Fibrosis Foundation over the past two + years; before which I had never heard of this horrible disease. Exposure to this incredibly professional and dedicated group of individuals as they carry out their personal and organizational mission has been inspiring to say the least. The very genuine care and sensitivity they exude each and every day is remarkable. To a person, this is not a "job", but a passionate cause. I cannot imagine that such commitment will not produce incredible results and ultimately contribute to a cure.

23 years who suffered from Pulmonary Fibrosis. The foundation helped me see that i wasn't the only one in this world with this awful disease. thanks to them i met so many great people and lost so many. But not one second do i regret doing things for them. Photo shoot, going to the Summit and Annual Dinner. In july 12 i received my Double Lung Transplant and received so much love and support from people i have met through the foundation. Friends and Family. So much love i did a 3mile walk for Pulmonary Fibrosis. The foundation deserves all the love and support you can give. They try their hardest to find a cure,to help one another. they are just awesome!! Love them to heart and they are like my family. thanks to them i am full of love to others..

Gale 57 Idiopathic Pulmonary Fibrosis is a horrible disease. In 2009 I went from one day a very active person to the next day unable to do dishes without having to sit down & rest. I am now starting to cough alot to only bring up a paste like substance from my lungs. I have read some of the reviews here & it is heart breaking that there are no federal funding to find a cure for a disease that kills as many as breast cancer every year !!! My advice don't take anything for granted in this life & if your able to something to help get the awareness out of this disease, "Do it" contact your local & state Representative's tell them you think there should be funding for this. I may not live to reap the rewards but you/your child/or grand child may...If you don't feel you can do any of this please pray for a cure..God Bless ...

My husband passed away in 2008 of Idiopathic Pulmonary Fibrosis. At the time, I had never heard of the disease. I didn't know who to ask or where to go to get information. This year I discovered PFF on Facebook and was so thrilled and sad at the same time. I was able to find out information on this disease and for the first time since my husband passed away, I was able to get peace. I was no longer alone.

The Pulmonary Fibrosis Foundation is an excellent organization that serves patients and their families across the US (and even across the globe!). Idiopathic pulmonary fibrosis (IPF) is a terrible disease, and to know that there is group dedicated to fighting it offers comfort during the bleak time after a diagnosis. I encourage everyone affected by IPF (patients, family members, and friends) to 'like' this group on Facebook or reach out to The PFF in some way because the support and information they provide is absolutely phenomenal. Thank you Pulmonary Fibrosis Foundation for all that you do!!!

When my mother was diagnosed with idiopathic pulmonary fibrosis, I had never heard of the disease before. Soon thereafter, a family friend was also diagnosed, and eventually the son of the family friend was diagnosed. Watching someone you love live with fear in their eyes every single day as they grasp for breath, change from an extremely active healthy person to one that cannot carry dishes from the kitchen to the dining room, and spend hours everyday trying to cough a paste-like substance out of their lungs, to the point of exhaustion, is something I would not wish on anyone. While it impacts so many people, including most recently my boss's father, I am continuously surprised at how few people know about this devastating illness. When we were looking for information, a support system, or a resource we could not find one at the time. It is imperative that the Pulmonary Fibrosis Foundation have more attention and funding to help our loved ones and their families when they are faced with this disease.

My Sister was diagnosed with this horrible disease and am praying for her and The Pulmonary Fibrosis Foundation. We need a cure!!! PFF is helping more people aware of this little known disease. Thank you Pulmonary Fibrosis Foundation for all you do!!!

They shine a light on a disease that few have heard of. Thanks for all that you do including the medical grants that may someday result in a cure for a disease I have had for five years.

Outstanding organization with a laser-focus on helping people with pulmonary fibrosis, a dreadful disease. Committed professionals with expertise, energy and empathy.

Idiopathic Pulmonary Fibrosis(IPF)is a terrible diagnosis---like cancer but without treatment or cure. The PFF guides each of us to best current information...including Clinical Trials, Support Groups, world experts. They answer our questions about options...including lung transplants. They're there for us person-to-person to answer questions...or direct us to where we can get answers. PFF is the worldwide leader in Consilience(the Unity of Knowledge)...sponsoring conferences for leading researchers..OPEN TO PATIENTS. It's made a great difference in my life, shifting my focus to how I might be helpful to others confronted with this disease.

Losing a loved one is never easy but I think it is especially harder to lose a loved one to a disease you have never heard of, a disease with no cure, a disease which doctors can not explain. My dad was diagnosed with Pulmonary Fibrosis in March 2009. He was an active man who loved his family and was in seemingly good health. My family was devastated when my dad succumbed to this disease in September 2009, six short months from his initial diagnosis. My siblings and I have set out to raise awareness and funds towards the research of pulmonary fibrosis. Over the last two and a half years, we have had the great pleasure of working with the Pulmonary Fibrosis Foundation. Visiting the Pulmonary Fibrosis Foundation's website, anyone can see the numerous ways the foundation supports the medical community and those dedicated to researching and learning about PF. Perhaps more impressive, however, is the community of patients, family and friends the foundation has created. The Pulmonary Fibrosis Foundation gathers the common people together to work together to raise awareness and together find a voice to help raise awareness in the public.

I have had the pleasure of getting to know the wonderfully professional staff at the Pulmonary Fibrosis Foundation through my work with Dr. Imre Noth at the University of Chicago. They have been fierce advocates for this horrible disease and have been big supporters of the research being done by the top experts in the field, like Dr. Noth. They don't just raise money and then give it away. They raise money, awareness and hope for those effected by this deadly disease and provide critical support to help find both the cause and the cure for this disease. We are all grateful for everything they do!

My father was diagnosed with Pulmonary Fibrosis in October 2010. At that time we never heard of this disease. After my father's diagnosis we began to research IPF and was horrified to learn that there is no cure and very little awareness. I am saddened to say that my father lost his battle from IPF On December 21, 2010. After my father's passing my family embarked on a mission to raise funds and awareness for this disease. We have since held two fundraising walks in memory of my father and have combined raised a total of $30,000. This would not have been possible without the help and support of the Pulmonary Fibrosis Foundation. The Pulmonary Fibrosis Foundation is a wonderful foundation that works extremly hard to fight the battle to find a cure for this unforgiving disease. The staff is amazing and so supportive from organizing a fundraising event to allowing people to connect with others that have been touched by this disease. The Pulmonary Fibrosis Foundation IS A GREAT NON PROFIT!

My husband was diagnosed with Pulmonary Fibrosis in 2008 --He was told he had maybe 2-3 years left to live. We had never even heard of this disease. For years he was diagnosed with asthma, a common misdiagnosis. Thankfully , he received a new lung in 2010 ( on our 18th wedding anniversary!) and his life expectancy has been extended for many more years . This journey has been very difficult to say the least but the PFF has been there every step of the way -They are pushing very hard to spread awareness of this devastating disease as well as trying hard to get federal funding . This disease is being seen more and more ( particularly among men around 60 plus years ) and as Americans get older the expectation is that we are going to see more and more cases of this illness--an illness that many people don't even know about --so research, awareness and treatment options are CRUCIAL --The PFF is in the forefront and as the disease is growing I would like to see the Foundation have a deep and solid base of operations forever as it has become very apparent to me that this non -profit operation is going to become a major force to help fight this disease. Julie Halston

My background is in government and nonprofit management. Early this year I joined the board of a small nonprofit in Southern Indiana which is focused on providing education and awareness of Pulmonary Fibrosis, a progressive lung disease that is often misdiagnosed and has no known cure. More recently I became the executive director of the organization, and over the past 6 months have had the pleasure of getting to know and work with the staff and some of the volunteers of the Pulmonary Fibrosis Foundation (PFF). The focus of PFF is to support research efforts to find a cure for the disease, to advocate for the pulmonary fibrosis community, promote disease awareness and provide a compassionate environment for patients and their families. Everyone that I have met, whether staff, patients, doctors or donors, have been passionately committed to the success of PFF. With their support the Foundation has grown, not just nationally, but internationally. The organization has a clear vision and ambitious goals, but it also has developed the strategies and tactics to achieve them.

Pulmonary Fibrosis is a relentlessly progressive lung scarring disease without a known cause, treatment, or cure. I lost my father to Pulmonary Fibrosis two and a half years ago. He was only 65, was otherwise healthy, and lived an active life. There was nothing we could do to prevent him from getting this disease and there was nothing we could do to take the disease away from him. The Pulmonary Fibrosis Foundation answered my questions about this disease and they are working hard to promote awareness and raise money to help researchers find a cause, treatment, and/or cure for this disease. I have hosted two golf tournaments and a Global Dinner in an effort to help the Pulmonary Fibrosis Foundation with their cause. It is my hope that my children's generation does not have to worry about losing loved ones to this terrible disease.