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jano

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1 reviews

Review for Pulmonary Fibrosis Association of Texas Inc, Houston, TX, USA

Rating: 5 stars  

In 2002 we were personally faced with a diagnosis we had never heard of, Pulmonary Fibrosis, and worse we understood it to be very rare and as if we were the only family within thousands of miles living with it. We were told the disease is terminal and has no treatment or cure and that we may have two to three years life expectancy. We felt very alone and had many questions but no where to turn for answers. A few months later we met another patient, by accident, and decided if we were so happy to meet, other patients must be looking for the same thing...answers, encouragement and hope. Step One: We started a Support Group and people came and are still coming seven years later. About the third year we started getting calls from across the country, patients being turned down for oxygen because they no longer had health insurance or funds to pay for the air they needed to live. It is never OK for a human being to be denied the oxygen they need to breathe. We began searching for providers of oxygen for patients in need and when necessary the organization funds it for them. We help them work with their oxygen companies to understand their billing and to get more useful oxygen equipment to use when they leave home. Step Two: Members of the Support Group worked hard to help develop and prepare the paperwork necessary to file for Non Profit Status. Within two weeks of submitting the application we were approved and received our 501(c)(3) status paperwork and invited Physicians to participate as an Advisory Board. Eight weeks later we hosted our first annual Golf Tournament to Benefit Pulmonary Fibrosis patients. We continue to find avenues to raise funds to assist PF patients in need get hope, support and the education they need to fight their battle. To the very last days of a patients life, we will provide what healthcare equipment we can, hold hands and listen as best we can. Patients walking out of a Support Group meeting have been heard to say "I learned more in two hours than I have in two years" and we have seen many people walk in as frightened new members then leave as encouraged and empowered patients with new friends. Every simple 'Thank You' from a family strengthens our resolve to help and be there for more PF patients walking this path. Pulmonary Fibrosis takes the lives of more patients each year than Breast Cancer and continues to grow. We are working hard to raise awareness, educate, provide and be there for the next new patient diagnosed with a disease that still takes our breath away.

I've personally experienced the results of this organization in...

volunteering my time at fund-raisers;attending meetings;organizing speakers and lunches;helping patients by delivering wheelchairs, walkers and oxygen and talking to patients over the phone every week.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

Role:  Board Member & We have helped grow this non-profit from a need to a reality.