The Daily Beast

Will Congress Help This 36-Year-Old ALS Patient Waiting for Access to Experimental Drugs?

Courtesy Mayuri Saxena

Mayuri Saxena first knew something was off when she began tripping at work and struggling to get out of her seat during her NYC subway commute. In just three months the 32-year-old became wheelchair-bound, but eventually she learned what was wrong: She had ALS.

Facing a two- to five-year life expectancy from Amyotrophic Lateral Sclerosis, a degenerative neuro-muscular disease that largely impacts voluntary muscles including vocal cords, Saxena and her family looked to experimental drug trials as their only chance at treating the disease. One by one she was rejected either because of her wheelchair use, or being too far along in her disease.

“That’s honestly when our hope started going down the drain,” said Mayak Saxena, Mayuri’s brother. “To know that a treatment like that exists on this planet and on the other hand to see my sister suffering and dying and in pain. It’s such a huge injustice that has to be remedied on so many fronts.”

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