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
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.
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.