My name is Bob O'Rourke and I learned 3 years ago that I have Pulmonary Fibrosis. The news rocked me and my family to the core. When we walked into the doctor's office I only knew I wasn't feeling well, and by the time we walked out of that office I was dealing with a death sentence. This same terrible experience is shared by approximately 48,000 other people every year, and those newly diagnosed patients can be 38 years old or 65 - there are no rules and no age limitations with pulmonary fibrosis.
My wife Sandy and I started to grapple with the anger, sadness and frustration that washed over us after we heard the news, and we found it nearly impossible to understand how I could have a disease about which we had never heard a word. More shockingly, we have since learned that it is one that takes as many lives each year as breast cancer.
The choice that Sandy and I have made is to fight to bring awareness to Pulmonary Fibrosis - to take action by joining with the Coalition for Pulmonary Fibrosis to build national awareness and, ultimately, to expand the funding around research on this disease. Our shared approach to life is that when you are faced with the ultimate challenge, you rise up and meet it. In this case the challenge is the silence around PF - that silence must be broken.
We are grateful that you are reading this page and learning something about PF - that's excellent - but now we need your help. We want to encourage you to join the CPF's Pulmonary Fibrosis Awareness Campaign in conjunction with the efforts of the CPF Board of Directors and staff at the organization. You can write a note on this page to express your concern, you can support the campaign fund so that we can share the information with the broadest public audience, and you can join the CPF's advocacy effort via their website so that we can swell the ranks of people contacting Congress about the disease.
Keep in mind - every 13 minutes someone dies from PF - there are no treatments - it is random and anyone can be diagnosed with the disease - the numbers of patients only continues to increase - and it will take millions of dollars in research investment to turn the corner and find treatments.
Please don't wait until this strikes your family or friends - by then it will be too late.
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