MS patient's success leads to Train The Brain Fund
After success in helping his MS, Kurt Shafer wanted to help other people have the chance as well.
Posted: Tue, May 31, 2011
That's the direction Omahan Kurt Shafer was heading last summer.
The 61-year-old, who was diagnosed with multiple sclerosis in the early 2000s, would enter a room and rather than look for someone he knew, he'd look for a place to sit. If he did attempt to walk, he would use a walking stick or cling to his wife, Mary.
The Shafers, married for 37 years, prepared themselves for further decline. While a regimen of shots helped slow the progression of MS, the side effects took their toll. Shafer constantly felt "crummy."
Things started to look up after a visit to the University of Wisconsin-Madison, where he became part of an MS trial. There, a team of scientists guided him through a routine that involved the use of a tongue stimulating device.
The battery-powered device (called a PoNS, for Portable Neuromodulation Stimulator) is placed on the tongue where thousands of nerve endings are stimulated to send messages to the healthy areas of the brain. This creates a "rewiring" around damaged nerve sites and significantly restores balance and muscular strength in a matter of weeks.
"It feels like Pop Rocks on your tongue," Shafer told Omaha television station KETV.
After just two weeks of balance and walking therapy sessions using the tongue device, Shafer saw improvement. He went from a 7.5 on the Dynamic Gait Index – a test that assesses gait, balance and the risk of falling – to a 10.5. After two months, he recorded a 17.5. The highest score is a 24.
The story could have ended there, but Shafer didn't want it to. He wanted to pay it forward.
Shafer donated to the University of Nebraska Foundation to create a research fund, appropriately called Train The Brain, so the University of Nebraska Medical Center's Munroe-Meyer Institute for Genetics and Rehabilitation could replicate the Wisconsin study in Omaha.
The Munroe-Meyer Institute provides treatments and therapies to people with disabilities.
Wisconsin scientists are seeking FDA approval for the tongue device. To get it, they need proof of their concept. That proof must come from an identical study at another institution that can replicate their findings. Through Shafer's efforts, arrangements were made for the UNMC's Munroe-Meyer Institute to conduct this vital study.
Enter Max Kurz, Ph.D., of the Munroe-Meyer Institute.
As the director of biomechanics, he's conducted similar studies on children with balance disorders using a device called the Brainport. His patients showed success.
"I would love the opportunity to further expand our research and collaborate to bring this cutting-edge neurotechnology to UNMC and the Omaha community," he says. "The clinical trial being proposed represents a critical steppingstone for supporting the initial outcomes for those with MS with hard science."
There's just one problem: funding.
Dr. Kurz and his collaborators need $250,000 to replicate the study. Although external money for the project is being sought from the National Institutes of Health, the immediate success of the project depends upon donor support – and people like Shafer.
"It looks like I went to the Frankenstein school of walking," Shafer told KETV. "But I'm a lot better and there are so many people that could get better, too. Now that I'm doing so much better, my hope is restored. I just don't think it's fair that I'm the only one who gets to do this. Other people should get the chance. They could get better, instead of getting worse more slowly."
Says Melonie Welsh of the University of Nebraska Foundation: "He's not only given us dollars, but he's shared his passion with us."
Although Shafer made the first donation to bring the study to Omaha, Dr. Frank Driscoll, an Omaha dentist whose son has MS, has also taken a leadership role in advancing this initiative by sending out more than 500 personal letters to educate the public about MS and asking for donations and has made a personal donation to Train The Brain.
To learn more about this study, contact the Munroe-Meyer Institute at 402-559-6415. If you'd like to help support the Train The Brain Fund – a Campaign for Nebraska priority for the institute – please give online or contact Melonie Welsh at 402-502-4117.