I am Sarah Parton
living with ALS
Pennsylvania
Knowing that future generations may be given this diagnosis make me more motivated than ever to prioritize and fight for pre-symptomatic treatment, expanded genetic testing, and genetic research funding.
My name is Sarah and I have ALS. This is a disease I have always known about and always feared. The loss of me and everything I love is what this disease brings. I am a wife, mom, and gigi. The people I love have to watch what this disease will do.
One thing I am making a priority is to educate and advocate. I want everyone to know what ALS is and what this community needs.
I am fortunate to have slow progression and this will give me time to make the impacts I hope to. I currently live in a state that does not have Medicated Assisted dying. I am active in bringing this to my state. I am also active in familial ALS communities. C9orf72 is the most common gene that carries ALS. I have that gene. Knowing that future generations may be given this diagnosis make me more motivated than ever to prioritize and fight for pre-symptomatic treatment, expanded genetic testing, and genetic research funding.
I have dedicated my professional career to human services and will continue to fight for humans who hear the devastating news that they have ALS.
