June 24, 2020

Siblings, both battling ALS, fight for more treatment options

PEABODY — In the span of a year, both Michael Moutsoulas, 43, and his sister Stephenie, 44, were diagnosed with amyotrophic lateral sclerosis, or ALS, a neurodegenerative disease also known as Lou Gehrig's disease.

The siblings have an inherited form of the disease. Their biological mother died of ALS in 2016, and her sister died of the disease about 18 years ago.

There is no cure for ALS. But the siblings are fighting for increased access to treatments that show better promise than the few that are approved.

Stephenie Moutsoulas was diagnosed first, in December 2018. A former hairdresser, she now uses a speaking app on her phone to communicate, needs assistance walking and requires a feeding tube.

"When my sister was diagnosed, we were devastated," said Mike Moutsoulas.

Mike, a former School Committee member in Peabody, was diagnosed the following November.

"There were changes in my speech, as you can hear, I am slurring," he said.

A Peabody resident for most of his life, Mike Moutsoulas has three children, Mary, 7, Emma, 5, and Mike, 4, with his wife, Lisa, whom he met 23 years ago while they both served in the Navy. He's the nephew of Ward 3 Councilor James Moutsoulas.

"He's a dynamic guy," said Lisa Moutsoulas, who became emotional talking how her husband and sister-in-law are fighting the same disease. "It's very hard, but they are dynamic and they have the best support group. And I know, given the right vehicle, he'll be able to push the efforts out there."

In ALS, motor neurons in a patient's brain and spinal chord that control voluntary muscles die. Patients gradually lose the ability to speak, walk, eat and breathe.

The ALS Association says about 5,000 people are diagnosed each year, but only about 10% have a family history of the disease.

"Mike has always given everything he has to the people and things he cares about," said Peabody Mayor Ted Bettencourt, a friend of Moutsoulas's. "So it's no surprise that he would fight so hard to help those suffering with ALS."

Making a difference

Moutsoulas and his sister are raising awareness and money to help those with ALS through their nonprofit, Feffin' Strong.

When a haircut was hard to come by due to the pandemic, Mike Moutsoulas took part in the #ShaveALSChallenge, in which people shave their hair, nominate others to do the same, then share a video on social media. The challenge seeks to get the Food and Drug Administration to approve promising treatments that have long been in clinical trials, such as the therapy NurOwn.

In May, Moutsoulas traveled to Washington, D.C., with about 55 other ALS patients and their families to stage a protest in front of the White House calling for greater access to experimental treatments.

Moutsoulas points out that during the COVID-19 pandemic, it has been possible for the FDA to fast track vaccines and other treatments for the coronavirus.

"We ask, why can't the same urgency apply for ALS?" he said.

There are two bills in Congress, including one in the House called the Accelerated Access to Critical Therapies for ALS Act, which Moutsoulas said would provide expedited access for promising pathways to treatments and address funding for ALS research.

Tim Biba, spokesman for U.S. Rep. Seth Moulton, D-Salem, said Moulton's office is going to monitor the bill's progress, as well as suggestions from ALS patients and advocates that would strengthen it.

"Any effort to expand therapy options for ALS patients is a worthwhile effort," Biba said.

Such legislation could take a year to work its way through Congress, Moutsoulas said. That's why he hopes President Donald Trump will sign an executive order to create pathways to treatments like NurOwn.

While there are valid critiques of the bill, Moutsoulas said, "time is not on our side."

ALS awareness

Many on the North Shore know about ALS through Pete Frates of Beverly, whose battle with the disease inspired the Ice Bucket Challenge that has raised more than $200 million for ALS research. Frates died in December 2019, and his family remains active in the ALS community.

"If it wasn't for the Frates family putting ALS on the map and providing crucial funds, we wouldn't be where we are today," Mike Moutsoulas said.

When his sister was diagnosed, Moutsoulas said the Frates family reached out to offer advice and encouragement.

John Frates, Pete's father, said it's difficult for ALS patients to advocate for a cure because it's a rare disease and patients typically survive for only a few years.

"Godspeed to them and hopefully something wonderful will come of it," John Frates said of Moutsoulas and his sister's advocacy.

By:  Ethan Forman
Source: The Salem News