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ALS Patient Advocates for the Lives of Future Patients

A decade ago, Tom Milianti started falling down without cause. After the truck driver fell on his face, breaking his nose and knocking out teeth, he decided he needed to go to the doctor.

By November of 2004, doctors had ruled out everything except a disease with a 100 percent mortality rate: amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease.

Milianti, now 62, lost his balance first, and, within a year, lost the ability to raise both of his arms. Later on, the disease took his ability to walk and eat solid foods like his favorite dish, spaghetti.

"I miss playing with my grandkids the most," said the military veteran from Homer Glen, Ill., who has three children and five grandchildren. "Their other grandpa plays catch with them, and they ask me, ‘Why can’t you play ball?’"

Tom Milianti and Raymond Roos, MD From left to right: Tom Milianti and neurologist Raymond Roos, MD, at an event for the ALS Association of Greater Chicago.

Still, Milianti said he is thankful to be alive when most ALS patients die within three to five years of their diagnosis. He and his family advocate for ALS research in Illinois and Washington, D.C., in hopes of finding a cure for the degenerative disease. Milianti’s daughter, Tina Forshey, even sits on a Department of Defense committee that allocates funding for ALS research.

"Tom’s very upbeat about his condition," said his doctor, Raymond Roos, MD, the Marjorie and Robert E. Straus Professor of Neurology who sees Milianti every two months. "I admire him and his family for their advocacy efforts."

At a recent ALS event, hosted at the University of Chicago by the Greater Chicago Chapter of the ALS Association, Roos told Milianti and 200 patients and caregivers that scientists are closer than ever to understanding ALS.

"It’s astounding and exciting what’s going on with respect to neurodegenerative diseases at this time, and especially ALS," Roos said at the event. "Should we be optimistic about the future? Yes."

While Milianti said he knows scientists will most likely not find a cure in time for him, hearing about the research "gives me hope that they will find the cause of ALS and that a cure is not far behind. It's the light at the end of the tunnel."

January 2012

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