Cystic Fibrosis


This cause needs every research funding advantage it can get. With all of the ridiculous uses of taxpayer dollars in the federal budget, Cystic Fibrosis research is not even funded, yet it is a real and immediate threat to the lives of those who suffer with it every day. This is not simply another chronic disease…relative to many other funded diseases, chronic would be an upgrade for CF patients. Ill post another link where you can read a summary about CF…and then I want you to imagine being a 25 years old and having to take a hand full of pills every meal just to help you digest your food.  How would it be to  have to do breathing treatments three or four times a day just to keep the airway somewhat clear and hopefully deliver some measure of protection for your lungs against infection. Imagine having a miserable and unproductive cough throughout most of the day, every day. You cant get a meaningful job because you are truly limited on what you can do…you are too old to qualify for your parents insurance, unable to qualify for your own insurance, cant get medicaid because you cant get approved for disability and denied disability because CF is not given the attention it requires at the right levels of our bureaucracy.  What if you required a 10 day hospital stay with intensive IV antibiotics and lung treatments at least twice a year at tens of thousands of dollars per visit? How discouraging to know that without insurance, the average hospital wont even provide you the periodic treatments you need to stay alive because of the cost of treatment. Now add to it the stress of knowing that your life expectancy is less than half of that of the average American. Sound extreme? Sound impossible? It is very real. Of course, I am not talking about you or any member of your family…I just described the life of my nephew.  He, and over 30,000 Americans and more than double that number worldwide are currently facing the same challenges. Should we not be ashamed of ourselves for allowing such a killer to continue without doing everything we possibly can to prevent it? The Cystic Fibrosis Foundation, CF patients and their families,  all over the country have been the guiding force in nearly every step of forward momentum.  They need your help. Talk to your congressional leaders…Dont ask them where they stand…tell them where to stand.

Troy, has battled this horrible disease his entire life. For the last 26 years, it has been a battle that has literally drained the strength out of two of the strongest people I know…Troy and his mother, my sister Michelle. Though CF has made their lives a challenge beyond anything that most of us could imagine, it has not taken away their spirit and their resolve to be part of a solution to find a cure. The journey is complicated by the fact that there is no federal funding for research and so the CF foundation depends on fundraising and private donations. http://www.cff.org/great_strides/

Cystic fibrosis is a devastating genetic disease that affects tens of thousands of children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF. However, we continue to lose precious lives to CF every day. That’s why your help is needed now more than ever to ensure that a cure is found sooner – rather than later. To learn more about CF and the CF Foundation, visit www.cff.org.

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2 thoughts on “Cystic Fibrosis

  1. My upstairs neighbour is the surviving brother of a family devastated by cystic fibrosis – he escaped the gene but his brother and sister did not and died after reaching about 20 years. The dilemma – with his young wife – will their children carry it? So far so good but you are so right – with all the funds spent on G knows what – and all the needs we could fund – we need to tell our governments what we want – UK is not the same as USA but cystic fibrosis and other debilitating illnesses do not heed borders or governance.
    Thanks for following my blog – I am catching up on reading yours

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