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Help Me Fight ALS

Organized by: barbara owens

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THE STORY:

I was diagnosed with ALS 5 1/2 yrs ago. ALS has been around since 1869 and is 100% fatal. There is only 1 FDA approved drug which is not a cure and only gives a person a few extra weeks or months of being helpless. No one wants or deserves that. I sure as hell don't. This drug Riluzole is toxic to my liver. I stopped taking it 2 years ago after it almost killed me. Since FDA approval of new drugs takes years and many promising ones are not available to current ALS and other terminally ill patients, I need and want to take a chance on new technology and thinking. It's 2016! The absence of a cure for this is inexcusable and unfair. I can't just do nothing and wait to die. I need to at least try to help find a clue, for me and everyone who is fighting incurable diseases. Right to Try laws are being passed but there is nothing available from mainstream FDA Approved medicine for us to try! I and many others believe the cures for many diseases lie in the cellular level. Promising new biotech drugs are out of our reach because of red tape and financial reasons. I have found one option that is available now. SVF is a stem cell procedure that takes fat from my own body, separates the stem cells, then returns them to me intravenously. I think of it like rebooting a computer. It's classified as an investigative study which means no insurance will cover it. Part of the irony is that the results are being reported to the FDA. I need $9000 to try something that could save me or leave some kind of clue. I started this page to try and raise enough to get this procedure and pay for post procedure care. The average lifespan of ALS patients is 2-5 yrs. I am running out of time and hope. I know this SVF procedure is a long shot but right now it's my only shot. I live in Las Vegas and know long shots sometimes pay off. I'm hoping this one does! Please help me take this gamble. I have nothing to lose and a possible better quality of life to gain. Thank you for reading this far. I will be eternally grateful to all who help me.

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barbara owens

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