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This money is past due and definitely needed, and we can definitely find a cure. She is urging lawmakers to get behind this bill, hoping it will provide research, treatment and funding for patients. Lara Blume McGee is the founder of a non-profit in Arkansas called ALS in Wonderland that provides resources for ALS patients. “That’s the version of ALS that I have-the one that’s not treatable,” he said. Tommy Culpepper was diagnosed in 2019 and given a prognosis of 5-6 years. “He couldn’t unbutton his shirt to take a shower.” “I went to go grab lunch one day he was going to take a shower I came back and I was like, ‘Dad, why didn’t you take a shower?’ she asked. Kelly Dunaway’s dad was diagnosed with ALS in 2020 he died five months later.
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Those pushing for the bill say because this disease takes lives so quickly, time is not on our side, and there’s an extreme urgency to get this passed. It would provide $100 million each fiscal year from 2022-2026 to fund early access to ALS investigational therapies, accelerate ALS and neurodegenerative disease therapy development, and provide more research and development of interventions through a new Food and Drug Administration (FDA) research grants program.
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The bill is called The Accelerating Access to Critical Therapies for ALS Act. (KNWA/KFTA) – Arkansans are fighting in Washington for more resources for ALS patients, hoping a bipartisan bill can bring answers to this deadly disease.