Dr. Allyson Mayeux, a Marshfield Clinic internist, could talk about her brother Hal for hours.

“He loved his LSU (Louisiana State University) football games,” Dr. Mayeux said. “He had his core group of grade school friends that would go hunting every year. I think they killed more beer and time talking though.”

Mayeux’s brother lived in Baton Rouge, Louisiana, where their family is from. In 2013, her family’s life was forever changed.

“When I was studying for my board recertification, my brother called me complaining about tremors and things,” she said. “We thought he was stressed. He was going through a lot at the time.”

Hal went to a neurologist, who thought he had Parkinson’s. He was put on medication, and it helped for a while. But the medication stopped working, and Mayeux thought it was something else.

“During my board review, I came upon a case study involving Multiple System Atrophy, and I was convinced that’s what Hal had,” she said.

What is Multiple System Atrophy?

Multiple System Atrophy, or MSA, is a rare, degenerative neurologic condition that affects both men and women, usually starting in the 50s or early 60s. MSA has more widespread effects on the brain and body than Parkinson’s. She told her brother and family about the disease, and when Hal went back to the doctor, Mayeux’s diagnosis was correct.

There’s no cure,” she said. “When you read about it, it’s like a death sentence. You can only treat symptoms like orthostatic low blood pressure, but he also had tremors and his speech declined. He needed help with everything like feeding and dressing, and he eventually had 24-hour care. I came down regularly to Louisiana with my sisters to help out.”

After almost two years of battling the disease, Hal passed away in October 2015 at the age of 50. He had two sons, ages 13 and 11 at the time.

“It took everybody to help, and we realized that with the crowd that showed up to his funeral,” Mayeux said. “There were nine priests at the altar. People from all over came, so that was really special.”

Fighting for a cure in memory of Hal

A year before Hal was diagnosed, the MSA Coalition, the advocacy group for the disease, had their annual conference in Milwaukee, Wis. There, Mayeux met former Clinic neurologist Dr. Brad Hiner. She learned as much as she could about the disease and was even the keynote speaker at the annual MSA Coalition conference in Louisiana 2016. Since her brother’s diagnosis, Mayeux has done whatever she can to inform people about the disease. She also became an active member of the MSA Coalition.

“I want to make people aware of this disease, and know that it may be rare, but these patients and families exist,” Mayeux said.

For MSA Awareness Month, which is March, the MSA Coalition pushed to have governors across the country sign proclamations for their states declaring MSA Awareness Month. Mayeux had Governor Scott Walker sign one for Wisconsin.

MSA is not heavily funded, and it is difficult for patients to get the coverage they need. However, Mayeux and other MSA “warriors” will not stop until a cure is found.

“My association with the MSA Coalition will never go away,” she said. “It’s all volunteers, and the money they raise goes to real places for solid research. We consider ourselves warriors because we won’t stop fighting until we get a cure for MSA. I do this for my brother and for everyone else going through this disease.”