Trump’s new budget proposal calls for complete defunding of the ALS Registry, which will dramatically slow the research that I and thousands of other people with ALS are counting on to save our lives! This is a matter of life and death, not politics. My survival is not a partisan issue. I beg you to call or write to your representatives to let them know that this budget is unacceptable as long as it includes a call to defund the ALS Registry, one of our greatest sources of hope for a cure.
How I Live Now: Life With ALS 
I’m speechless…how much money does the government really give to the ALS registry. Likely almost nothing? I have had ALS for about 3 years and try to remain positive but when our own government makes decisions like this, it is disappointing.
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I definitely agree. I felt expendable when I heard the news. I’m not, though, and that is why I am fighting back. I even wrote a piece for the Huffington Post about this!
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