CARLSBAD — When doctors told Mike Ramirez he had amyotrophic lateral sclerosis, also known as ALS and Lou Gehrig’s disease, his reaction was typical.
“My whole family went into a deep funk,” he said. “But with the help and support of family and friends, that funk didn’t last very long.”
One month after his September 2009 diagnosis, Ramirez and his family and friends founded the Team Godfather Charitable Foundation with three goals — to raise money for a cure, increase awareness of the disease and provide support for anyone dealing with ALS.
“And we had to have fun in the process,” the 53-year-old Carlsbad resident said.
The nonprofit organization is holding its first major fundraiser, Groovin’ with Godfather, at 7:30 p.m. Aug. 5 at the Belly Up Tavern in Solana Beach. The event will include a silent auction and music by Venice and Atomic Groove.
“It’s going to be a blast,” Ramirez said.
That desire to enjoy life and help others seems to be the driving force behind everything Ramirez does these days.
“It’s very devastating to hear that in one or two years you have to pack your bags and be ready for the inevitable,” he said. “I had to think hard about what I wanted to do. I prayed daily for direction.”
One thing Ramirez vowed early on not to do was let his wife, Maureen, and their two children — Michael, 23, and Colleen, 20 — watch him suffer defeat.
“I didn’t want to be the poster boy for the disease,” he said. “And you know what they say. If dad’s hurting, the whole house is hurting. I knew my kids were watching.
“I would hate to see them watch me pack it in and give up,” Ramirez said. “It’s never been part of me to give up. Everybody has curve balls thrown at them. How you respond marks your character.”
His response is the advice he would offer to others who have received the same life-changing news.
“Pray for courage and strength and see it as an opportunity to spend time with family and friends,” he said. “I saw this as an opportunity to reach out and tell people I love them and how much I enjoy them.
“Live every day like it’s your last,” Ramirez said. “We are only guaranteed today. Embrace every day you are given. Of course, that’s easier said than done, but people have that ability.
“That’s a good formula for everybody, whether they’re sick or not,” he said.
Since his diagnosis, Ramirez has traveled to Ireland, Israel and Denver. He said every chance he gets he spends time with family and friends.
“The doctors said I have maybe two years to live,” Ramirez said. “They didn’t say I have two years to die.”
ALS is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. It causes a loss of muscle strength and coordination that eventually gets worse. ALS affects approximately 1 out of every 100,000 people.
In about 10 percent of the cases, ALS is caused by a genetic defect. Otherwise there is no known cause or cure.
Ramirez said the foundation name came from a nickname he acquired from his poker buddies and has nothing to do with “The Godfather” movies.
However, he recently received a letter from a Beverly Hills law firm claiming copyright infringement. True to his character, Ramirez found something positive about the situation.
“This may be a good opportunity to get a donation out of it,” he said.
Visit www.teamgodfather.org for more information, to buy tickets to the fundraiser or bid online for the silent auction.