Man with ALS Volunteers for Groundbreaking Study

Tim Evans hopes his participation will unlock new paths to independence for others living with the disease.

Apr. 6, 2026 at 1:12pm

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Tim Evans, a 40-year-old man living with ALS, has volunteered to be the first participant in a new study at Johns Hopkins Medicine that aims to improve the quality of life for ALS patients. After being diagnosed with the progressive neurodegenerative disease in 2014, Evans decided he wanted to lend the rest of his life to helping others rather than sitting at home and doing nothing.

Why it matters

ALS has no cure and severely impacts patients' ability to perform basic functions, leaving them increasingly reliant on caregivers. This study represents a promising new avenue of research that could unlock new paths to independence and improved quality of life for the estimated 5,000 Americans diagnosed with ALS each year.

The details

Evans, who has lost significant speech and upper body movement capabilities due to ALS, volunteered to be the first patient in the study led by Dr. Nathan Crone at Johns Hopkins Medicine. The researchers are focusing on developing new technologies and therapies that could enhance the independence and daily lives of ALS patients.

  • Tim Evans was diagnosed with ALS on Valentine's Day in 2014.
  • Evans volunteered to be the first participant in the Johns Hopkins study in early 2026.

The players

Tim Evans

A 40-year-old man living with ALS who has volunteered to be the first participant in a new study at Johns Hopkins Medicine aimed at improving quality of life for ALS patients.

Dee Evans

Tim Evans' wife of 40 years, who has been caring for him as his ALS has progressed and robbed him of speech and upper body movement capabilities.

Dr. Nathan Crone

The lead researcher on the Johns Hopkins study that Tim Evans has volunteered for, focused on developing new technologies and therapies to enhance independence and daily life for ALS patients.

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What they’re saying

“The more I thought about it, do I just want to sit at home, do nothing, and die? Or do I want to lend the rest of my life helping others?”

— Tim Evans

“Tim has to rely on me more to do things for him, to help him.”

— Dee Evans, Tim's Wife

What’s next

Researchers at Johns Hopkins Medicine will continue to monitor Tim Evans' progress and results from the study, which they hope will inform new treatments and technologies to improve quality of life for ALS patients.

The takeaway

Tim Evans' selfless decision to volunteer for this groundbreaking ALS study, despite his own debilitating condition, demonstrates the power of hope and the human spirit to make a difference in the lives of others facing devastating diseases.