Submitted by: Justin P. on Fri, 05/21/2021

I was diagnosed with ALS in 2019 at the age of 36. I am no longer able to dress my self or give my self showers I am loosing my upper body movements more and more every day I have kids that ask me every day why I can’t play with them anymore and I can’t help them with anything it hurts me and I don’t understand how the government can approve other drugs for emergency use and spend billions of dollars on finding treatment or cures for any disease that threatens them but can’t help us that have ALS with more funding to find better treatments or cure and I don’t understand when there is a treatment that could help me slow down this disease and give me a little bit longer to live and see my kids grow up they want us to damn near have to beg them to approve it guess they don’t understand how it feels knowing that this disease is a death sentence and I am willing to try anything to help me live longer even if there are risks

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