By Joel Hillan
HIGHLANDS RANCH, Colo. (CBS4) - One Highlands Ranch man has taken his battle with ALS to the government. Mike Cimbura has worked with state lawmakers to create Colorado's first ALS Caucus and with the help of Congressman Jared Polis, created one at the Federal level as well.
The Cimbura family is advocating for better health care coverage for those with ALS as well as greater access to promising treatments in the FDA pipeline.
Mike has been an ALS warrior since 2014. His wife, Nicole, recounted their experience.
"He was home from work for the weekend and went outside to clip his fingernails and he was like, 'Hun, I'm struggling to clip my fingernails with my left hand,' and I'm like, 'What?'" she said.
Mike went to his doctor and his blood work came back clean, so they sent him to a neurologist who originally told him nothing was wrong.
A week later he would call Nicole from Texas where he was traveling for work.
"He goes, 'Nicole, something is seriously wrong. Every day I feel more of my body dying. Every day I'm getting weaker. I'm finding things that are more challenging to do," she said.
This time, the neurologist sent them to the hospital and within 30 minutes the doctor had returned the diagnosis of ALS.
"She looks at me and was like, 'Are you okay?'" Nicole said. "And I'm like, 'No, no I'm not okay. You just told me my best friend, my faithful partner, the father of my kids is going to be gone and just start preparing ourselves for it.'"
Within months, the disease had progressed and Mike had become a prisoner in his own body. Technology tracks movement in his eyes and turns that into text. It's the only way he can communicate.
Mike was chosen to be a part of a clinical trial for BrainStorm's stem cell therapies.
The process works by collecting and culturing the patient's stem cells. A process that isolates and enriches the cells to secrete high levels of neurotrophic factors. These amped up stem cells are then returned to the body, delivering the neurotrophic factors to injured or degenerating neurons.
"Within 24 hours we started to see improvement, of Mike getting his stem cell transplant, which was amazing," Nicole said.
It was the miracle they had been hoping for.
"His left hand which was the first thing to go paralyzed was becoming mobile again. He could move it. He could pick up a pen and write, and the first thing he did was pick up a pen and write a note to our kids that said, 'I love you,'" Nicole said.
The effects of the treatment didn't last long. They did everything they could to try and help Mike continue to get the stem cell treatment. But it was a trial, and the trial was designed as only one dose.
"For diseases like cancer, diseases like AIDS, that's considered unethical. If it's showing promise, they can't remove you from it."
In March of 2016, Mike got the very first ALS Caucus off the ground at the state level, and with the help of Congressman Jared Polis, they have gotten the first federal ALS Caucus off the ground.
Recently they met with Sen. Cory Gardner, and also met with Congressman Mike Coffman.
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"This disease can strike anyone and it's truly a nightmare, it's a ruthless disease that takes an entire family to fight it," Nicole said.
BrainStorm is now in Phase III of its trial and has received Fast Track status from the Food and Drug Administration, but it still could be years before the treatment is available to treat ALS.
The Cimburas feel their calling is to educate and raise awareness about the disease.
"What can we do for these people so they don't have to go through what we through. That here we saw promise and got it pulled away from us," Nicole said.
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