North Shore siblings battling ALS start nonprofit to fight for more treatment options

PEABODY, Mass. — Mike and Stephenie Moutsoulas share a tight bond as brother and sister. They also share something incredibly devastating; both Mike and Stephenie have been diagnosed with ALS.

“The emotional toll our family is facing has been […] it’s been an emotional rollercoaster,” Mike Moutsoulas said.

Mike, who is 43 years old, has a wife and three children. He was diagnosed with the terminal illness in November 2019.

“I have a young family and I do have the fear that I won’t be here to raise them, and that scares my wife and I,” he said.

Stephenie, who is 44, was diagnosed a year earlier than Mike in December 2018. She needs a feeding tube and an app to speak.

Their biological mother and their mother’s sister also passed away from ALS. The siblings are now on a mission; they started a non-profit called Feffin’ Strong to raise awareness and fight for more treatment options for patients with ALS.

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In May, Mike even traveled to Washington D.C. to protest in front of the White House.

“ALS has never been prioritized, it is extremely underfunded,” he said.

Currently only four drugs have been approved for ALS treatment by the FDA. One has been undergoing clinical trials for nearly 10 years. Moutsoulas said he wants President Trump to push the FDA to fast track and approve a treatment for ALS, like he has for the coronavirus.

“This doesn’t have to be a sad ending, there are treatments available and clinical trials that can help ALS patients today,” he said.

In the last month, two different bills have been introduced in Congress that would provide funding and access to promising treatments. The term Feffin’ Strong comes from when Mike’s daughter was little she couldn’t say Stephenie, instead she called her Aunt Feffin.

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