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I am Juliana Galvao

a family member in a familial ALS family,
an ALS gene carrier,
living with ALS

Illinois


He was the kindest and most serene person that anyone will ever meet in their lifetime. He was definitely the type of person that this world desperately needs.

“Leave the world in a better place than you found it.”

I lost my dad, who was my best friend and my other half to ALS in April 2014. He passed away less than a year after his diagnosis which took a year. He was the kindest and most serene person that anyone will ever meet in their lifetime. He was definitely the type of person that this world desperately needs.

I was his caregiver so I saw up close what this horrible disease does to a person and a family. At the end, both his hands had atrophied, he couldn’t move his arms or his legs, he lost the ability to swallow solid food, he lost his speech and the sparkle in his eyes.

My contribution to the ALS community is to talk about the importance of getting gene testing if you have familial ALS. It’s undoubtedly a hard and emotional decision. In looking at the bigger picture, it could save the lives of so many people from not developing symptoms if they carry the gene.

One doctor once told me: “This disease affects the kindest souls.”

I want to do what I can to put a stop to ALS so no more families are affected by it. #endALS


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