Why I give to the Pulmonary Fibrosis Foundation. 12 years ago my mom was diagnosed with a disease we had not heard of - Idiopathic Pulmonary Fibrosis - a 100% fatal lung disease with no treatment and no cure. The PFF (www.pulmonaryfibrosis.org) is working every day to find a cure, while helping the PF community at the same time. In honor of my mom, Beverly Hart, and all those affected with PF, I give to the PFF to help with their mission because they care enough to go the extra mile for all affected by this killer disease. I don't stop at giving money. I also give of my time. I have become a PF Advocate for Patients and Families and operate multiple online support groups in Yahoo Groups and on Facebook. With my Breathe Support Network of Groups my goal is to ensure that patients, their families, and their friends do not have to walk the PF journey alone. PF is still widely unknown - even in the medical community. Mom and I walked alone for most of the 6 years she was alive after diagnosis. I vowed on the night she died that I would do everything I could to ensure others are not alone. I will continue my fight against PF and I will continue helping others until my last breath.
Review from #MyGivingStory
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..