Monday's death of famed 49er receiver Dwight Clark has brought new attention to a cruel and incurable disease.
Most ALS sufferers live between two to five years from the time of diagnosis. Clark announced he had ALS in March 2017, but had been experiencing symptoms for two years before that.
"With my husband, it started in his right hand and he was a high school coach and a teacher," recalled Lucy Wedemeyer, of Los Gatos, who is active as an advisory trustee with the ALS Association, Golden West Chapter.
ALS is a neurodegenerative disease that affects nerve cells in the brain and spinal cord.
The mind and senses remain sharp, but the disease robs the ability to move, speak, swallow, and finally, breathe.
"When you hear that, you really want to run and hide," said Wedemeyer, whose husband Charlie was a longtime football coach at Los Gatos High School, active even after he became debilitated, with Lucy reading his lips and calling the plays after his own voice failed.
Before his death in 2010, Charlie counted many 49er players as friends and supporters, Clark among them. Then Clark's own diagnosis came.
"In the beginning it was very difficult for Dwight to admit the loss," said Lucy Wedemeyer, "because it's a very embarrassing illness for these athletes who all of a sudden can't even feed themselves."
Yet Clark faced the terminal illness head-on, speaking publicly of his challenges, even appearing on the big screen at Levi's Stadium last fall, to thank fans for their support. His words were warm and heartfelt, but even then, his speech was affected.
"People are shocked and stunned by how fast ALS moves and how devastating it is," ALS Association CEO Fred Fisher told KTVU.
Fisher says the "ice bucket challenges", so popular a few years ago, raised awareness and millions of dollars that are funding new research and clinical trials, seeking treatments and a cure.
The ALS Association also guides patients and their families through the disease progression, as most people are cared for at home.
"The best thing we can do is support them, and we were happy to do so for Dwight and Kelly, and their friends," said Fisher. "Having a high-profile person with ALS gives enormous hope to the ALS community, because they often feel largely invisible."
Clark died with his family at his side at his home in Montana. He was 61.
A team statement, said, in part, "We join together to mourn the death of one of the most beloved figures in 49ers history. For almost four decades he served as a charismatic ambassador for our team and the Bay Area."
"The Catch," a Joe Montana throw pulled down by Clark, propelled the 49ers into their Super Bowl heyday of the 1980's.
It is one of the most iconic plays in sports, and is depicted on a huge banner outside Levi's Stadium.
But beyond his athletic prowess, Clark is remembered as approachable, humble, good-humored and friendly.
Lucy Wedemeyer considers him a hero to the ALS community, who left a valuable lesson and legacy.
"When he met with players, his friends, he blessed those guys showing them, no one is promised tomorrow," said Wedemeyer.
"Cherish the day. Do not lose sight of all the blessings. And that's what Dwight was all about."
The Golden West Chapter of the ALS Association supports patients and families throughout California and Hawaii.
More information on services, research, and upcoming fund-raising events can be found at www.alsagoldenwest.org.