Two St. Louis residents are making a 100-mile run to Jefferson City to advocate for those diagnosed with multiple sclerosis (MS).
Jon Franko and Matthew Porter will begin their “Show Me 100” in St. Charles County on Feb. 27. And after their run, the pair plans to meet with lawmakers upon arrival in Jefferson City to advocate for those diagnosed with MS.
“We chose to do this together because there is not yet a cure for multiple sclerosis. It’s important to us that we raise awareness so everyone, especially our state legislators, understand what it’s like to live with this disease,” Porter said. “And since we still have the ability to run, why not take on this challenge to show how committed we are to fight for everyone affected by MS.”
Franko and Porter, who both have been diagnosed with MS, have a goal to raise $100,000 for the National Multiple Sclerosis Society.
They have already begun initial outreach to lawmakers, including to Sen. Bill Eigel.
“I’m looking forward to being part of the run that Matthew Porter has put together — his tenacity, his willingness to serve, and his willingness to educate about the medical issues caused by MS has been a tremendous lift to everyone that’s been afflicted by this terrible disease,” Eigel said. “I just wish I was a little bit better runner and could stay with him longer on the trail!”
“We’re trying to help people understand what it’s like to have MS and the impact that the rules [and] laws that get passed in Missouri can have for somebody,” Porter told The Missouri Times. “It’s really about having that dialogue and that conversation with anybody and everybody.”
Specifically, Porter wants legislators to act against step therapy protocols which require that patients try one or more drugs selected by their insurer before being granted coverage for the medication that their healthcare provider originally prescribed.
“Step therapy protocols may result in lengthy delays before people can receive the treatment prescribed by their healthcare provider. For those of us with MS, the delay may result in disease progression, relapses, and disabilities. Treatment should be about the patient and her doctor. Lawmakers can ensure that local control between the patient and doctor remains the priority,” Porter said.
Porter anticipates the run will take 20-30 hours — and they do not plan to stop for breaks.
He acknowledged the run will be painful but said videos from his children and support from those on social media will keep him going.
Along with donations, Porter said citizens can support by reaching out on social media and asking their representatives to support initiatives to aid MS victims.
MS is a chronic disease that damages the central nervous system. Nearly 1 million people in the U.S. are living with MS.
Those interested in donating can do so here.
James Turner studies political science at the University of Missouri-St. Louis. Previously, he was a legislative intern for the Associated Students of the University of Missouri. James is a native of Ferguson, Missouri.
