Doctors and patients want to see more funding for ALS research



Posted on June 12, 2014 at 2:05 PM

Updated Thursday, Jun 12 at 7:11 PM

SPOKANE, Wash. – It was 75 years ago that New York Yankee, Lou Gehrig, said farewell to an adoring crowd.

ALS was robbing him of his ability to control his muscle and it was forcing him to retire from baseball. Gehrig probably could not have imagined that seven and a half decades after his goodbye, there would still be no disease modifying treatment for ALS

Dr. Greg Carter works at St. Luke’s Rehabilitation Institute trying to find funding for his own research on the disease.

“In terms of research funding ALS is not doing well. It’s doing very poorly,” said Dr. Carter.
Dr. Carter said giving someone a diagnosis of ALS is one of the hardest things he has to do as a doctor.

Jeff Trull got his diagnosis in January.

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“When I read about all the symptoms I was shocked because he matched all the symptoms, but I just didn’t want to believe that that was it,” said Jeff’s wife, Jennifer.

Jeff was a successful Deputy District Attorney and a father to three children. The 39-year-old relies on an electric wheelchair, just six months after his diagnosis. He uses his eyes to create words for a synthetic voice that stands in for his own.

“This disease has been like being trapped inside your own body without the ability to move or be understood,” said Dr. Carter. “There still isn’t anything to help the patients of ALS. So we need all the research we can get.”

Jeff and his doctor would like to see a future where ALS patients are given some hope of recovery or cure.

“Progress has been made and there is room for hope, but there’s a long way to go. I can be hopeful, yet not relying on an improvement,” said Jeff.

Instead of focusing on what the disease is taking away, Jeff tries to stay focused on what it has given him. It has given him time to make certain his family know how much they are loved and adored.