Five years in, advocates for spinal cord injury research frustrated by House committee inaction

A bipartisan measure to support spinal cord injury research is missing from the House higher education budget, frustrating paralyzed Minnesotans and their allies.

For the fifth year, advocates for Minnesota's 10,000 citizens with spinal cord injuries (SCI) have proposed some form of the measure. They say this year's proposed $8 million allocation would be matched by the National Institutes for Health and distributed to Minnesota institutions for research into paralysis and traumatic brain injuries (TBI). While the Senate passed $1 million in grants as part of its higher education budget, SCI research advocates say the measure has failed to gain any traction despite hundreds of hours of lobbying and backing from a number of lawmakers including the bill's chief authors, Sen. John Hoffman, DFL-Champlin, and Rep. Rod Hamilton, R-Mountain Lake.

Matthew Rodreick, executive director of the Get Up Stand Up 2 Cure Paralysis Foundation, said the grant would capitalize on Minnesota's legacy as a home for medical innovation. Not only would it improve lives, he said, but it could cut back on the millions in healthcare costs for paralyzed Minnesotans. They're putting their hopes in epidural stimulation, used in part with a device created by Medtronic that would be implanted in patients. It's currently undergoing some trials at Mayo Clinic and in Louisville, Ky. If the grants were approved, they say some of Minnesota's SCI patients could have access within a year.

Rodreick, who joined the movement after his son Gabe was paralyzed a teenager, said the larger population often focuses on people with spinal cord injuries as an inspiration for their perseverance and positive attitudes, rather than the potential that research could hold.

"We call that inspiration porn," Rodreick said. "It dilutes the humanity of this community and doesn't allow us to tell the story that we come here to tell as citizens of Minnesota."

Rep. Frank Hornstein, DFL-Minneapolis, called the proposed funding an example of the much larger political battle about the Legislature's priorities.

"It's not a pie-in-the-sky thing. It's something that's here and now and can help people," he said. "When you look at a $40-plus billion budget, and the amount that's being asked for and the amount of good it can do, it becomes a question of what are our priorities,"

Rob Wudlick – Wudlick, a 30-year-old from Excelsior, is in his third year rallying for the state-funded grants. A quadriplegic, Wudlick was injured four years ago while rafting down the Grand Canyon. Life since for the engineer has been difficult, to say the least. It takes about three hours to get ready in the morning, and he's no longer able to productively work. He lives with his parents in Excelsior.

"I've always said I have confidence, instead of hope, that I would get better." he said. It could mean the ability one day get out of his chair, and regaining independence with restoration of bowel, bladder and sex functions. Spinal stimulators being tested are doing just that, he said.

Jenni Taylor – Taylor, 28, of Minnetonka, was a teenager when a car accident left her paralyzed from the neck down. Despite being dependent on a ventilator, she paints with her mouth, blogs, got her associate's degree in communications and won Ms. Wheelchair Minnesota in 2011. In 12 years, she's regained feeling in most of her body, and can move her arms slightly. The thought of research that could one day give her even more independence invigorates her, while frustrating her that it's out of reach.

"It's not only for me, but this could help other people in the future," Taylor said.

Kelsey Peterson – Peterson, the reigning Ms. Wheelchair Minnesota, smiles and says the reasons are far-reaching for supporting research.

"It's not how anybody wants to live. It sucks, I'm not gonna lie," she said. "We're making it work, we're still living, but it would be life-changing.

Lynne Dorr – Dorr, 47, of Blaine, was an active working mom when a traffic accident with a deer left her quadriplegic.

"It literally takes pretty much everything away," she said as her shy young daughter perched on her lap. "I'd like some of that back. If I could have my hands, maybe I could make dinner. I could clean my own house, take care of myself and take care of my kids. If I could become more able bodied I think I would like to more active in the physical part of just life."

There are so many people things non-paralyzed people don't think about, Dorr said. It's not just running and being active, but simple activities like sitting on the couch next to her kids instead of in a wheelchair, or the importance of touch in personal relationships. She reached out and stroked her daughter's arm.

"I do this to her, but I can't feel her," she said.