Jeremy Merz was towering in presence at 6-foot-7 and even more so in spirit.
The late-1990s Jesuit High School student-athlete star and California Chamber of Commerce policy advocate inspired those he knew best and those he encountered late in life as he courageously battled ALS.
Merz died from ALS on Tuesday. He was 42.
Amyotrophic Lateral Sclerosis is a progressive disease that affects the nerve cells in the brain. It leads to a loss of muscle control. ALS is often referred to as “Lou Gehrig’s Disease,” named after the famed New York Yankees star who died from it in 1941 at age 37.
Merz was surrounded by family — his wife, Megan, and their three young children — in his final months and days. Merz and his wife found out they were having twins in March. A month later, Merz was diagnosed with ALS, telling The Bee in a September profile the news was “a gut punch to me and my family.”
Said Megan in a Facebook post, in part, “He is now free from pain and sorrow. He has been released from a body that had become a prison. He is loved by so many and I am eternally grateful that he knew that in the end…I know Jeremy will be watching and loving us all from the best vantage point in heaven.”
Merz was the department vice president of state government relations for the American Property Casualty Insurance Association. Jennifer Barrera, president and CEO of the California Chamber of Commerce, issued a statement on the chambers website, saying: “Jeremy was a force for good and an effective advocate throughout his life. While Jeremy was with CalChamber, he was a strong voice representing California employers in the Capitol. When he was diagnosed with ALS, he immediately began using his advocacy skills to make a huge difference for all those impacted by ALS, fighting for more resources and care for the victims of this terrible disease.
“Jeremy was a friend to so many people in the Capitol community and he is extremely well-respected by all who were lucky enough to work with him. He leaves behind an incredible legacy of leadership — both professionally and personally — and his larger-than-life presence will be missed by all of us.”
Merz earlier this month was honored as the Dean and Kathleen Rasmussen Advocate of the Year by the Golden West Chapter of the ALS Association. Merz told The Bee he would advocate ALS awareness, while continuing to be a father, husband and friend, to the end.
“This disease does not discriminate,” Merz said. “You have to adjust. I appreciate the things that bring me joy.”
In The Bee story, Merz wondered, “Why me?” and concluded, “We’ve all got battles in life, every one of us. This is mine. It’s something I’ve got to deal with.”
Merz overcame hardships before, but knew he could not win this fight. A star football player at Jesuit, Merz was not able to play at Idaho State on scholarship because of a brain tumor. He had it removed, quit football, left Idaho State and transferred to UC Davis, graduating there and later from law school.
He said he was moved by the support of people he knew well or didn’t know at all.
“I know I’m loved,” Merz said. “People, the way they’ve rallied around me, helping with meals, helping me walk, talking to me, the Sacramento community support has been absolutely amazing.”
Said Megan in The Bee story, “He’s an amazing husband, an amazing father, an amazing person. It doesn’t seem fair, but life isn’t fair. It’s such a cruel disease, how it takes away every function you have, and you don’t know how long you’ll live. Our twins are 4 weeks old (in September). It’s hard to see the difference, these healthy babies, growing, living, and their dad, who’s body is failing him.
“That’s the hardest thing about this. The body fails but the mind doesn’t. You slowly lose the ability to talk, but the mind is still there. I’m so incredibly proud of Jeremy and what he’s done since he was diagnosed, how quickly he jumped into fundraising, lobbying efforts to raise money for ALS research, meeting people at the state Capitol.”
Funeral services are pending.