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