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Bay Area non-profit looking for volunteers in Lou Gehrig diseases study

lou gehrig dan gaken.jpg
Daniel M. Gaken
/
Flickr / Creative Commons
Jersey worn by Yankee great Lou Gehrig, after whom the disease amyotrophic lateral sclerosis is named.

EverythingALS said it needs more than 300 volunteers for its study to combat amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease, an incurable, degenerative illness.

Nearly 700 people have already been recruited this year in a national speech study. An estimated 30,000 Americans are living with ALS, which causes widespread loss of muscle control as nerve cells in the brain and spinal cord are destroyed.

Early symptoms range from twitching, cramps and weakness to difficulty chewing and slurred speech. Patients typically do not live more than five years after signs of the disease first appear.

The co-founder of EverythingALS said in a press release that the 1,000 participants will help the group reinvent the research platform by using a patient-centric, citizen-science approach, to move things 1,000 times faster.

The study will be done remotely via web-based computer software that records and analyzes how quickly and deeply participants breathe, as well as the volume of their voice as they speak into a microphone.