Blue & Gold Illustrated: America's Foremost Authority on Notre Dame Football
Issue link: http://read.uberflip.com/i/140522
A By Dan Murphy ra Parseghian wakes every morning before 6 a.m. Old habits are hard to break. During his tenure as the head coach at Notre Dame from 1964-74, Parseghian was at Milt's Grill in downtown South Bend by sunrise most mornings to start his long day with breakfast and coffee. His days are shorter now, but busy nonetheless. Milt's closed its doors long ago. Parseghian now drinks his morning coffee in the kitchen of his home in nearby Granger, Ind. He sifts through the Chicago Tribune, while Joe Scarborough echoes the biggest headlines on the cable news program in the background. He takes his time, enjoying the pace of a man that has accomplished a lot in nine decades of early mornings. a plan to start a foundation and search for a cure. "This ranks as the No. 1 challenge I've faced. There's no question about it," Parseghian said. "You say let's find a cure to this, and that's what we went about doing. It wasn't easy because of the length of time that's involved in the research. But I really feel like we've moved the ball down the field a long way." Researchers knew very little about Niemann-Pick in 1994. The Ara Parseghian Medical Research Foundation started with its feet at the 1-foot line, the old coach often says. The disease affects one in 150,000 children, according to the National Institutes of Health. It attacks cells in the brain and central nervous system, and few victims survive petri dish, is designed to considerably slow the effects of the disease. It's one of three possible solutions in the trial stage of development. Cindy Parseghian, the foundation's president, is optimistic that these three will eventually be ingredients in a cocktail of drugs that can serve essentially as a cure. "We've punched it out from the shadows of the goal line and got past the 40 out to the 50," Ara said in his familiar analogy. "We're across the 40 and I think we're down inside the 30-yard line now. We've got an opportunity to score." Football and medical research are vastly different battles. For much of its first 15 years, the foundation funded work to simply understand the disease and identify the genetic culprit. Finding resources and follow- His Biggest Battle At 90 years old, two-time national champion Ara Parseghian is still grinding away at his toughest opponent, the disease that took three of his grandchildren After breakfast, Parseghian dresses for the day and moves to his home office where a stack of requests waits. There are letters to write, paperwork to complete and autograph seekers to appease. Thirty-nine years after coaching his last college football game, he is the country's oldest living national champion, and fans still want a piece of him. "It's still constant with that stuff," Parseghian said. "I attribute it to the Internet." He works happily toward the bottom of the pile each day. Many of the autographs are for charitable causes. Most of the letters are personal thank you notes for donations. Each signature, he hopes, is another small step forward in the fight against the toughest and longest-standing opponent of his life. Parseghian first came face-to-face with Niemann-Pick Type C disease on a home football Saturday in the fall of 1994. While the rest of campus waited anxiously for Ron Powlus to make his debut at Notre Dame Stadium against Michigan, Parseghian's son and daughter-in-law were explaining to the family that three of their four children were recently diagnosed with the rare and fatal neurological disease. It took some time for Mark and Cindy Parseghian to find their moorings in the weeks that followed. They debated pulling their children from school and showing them the world while they still could. Eventually, the Parseghians decided to stick around and fight. They came to Ara a month later with into adulthood. The problem starts with a gene mutation that traps the cholesterol our body produces inside individual cells. That cholesterol combines with other molecules and keeps the cell from functioning properly. "We need the cholesterol in the membranes of our cells and not the interior of the cells," said Dr. Paul Helquist, a chemistry professor who has been researching Niemann-Pick as a member of Notre Dame's Center For Rare and Neglected Diseases. "The problem with this disease is that the cholesterol enters the cell by normal processes, but then the trafficking from inside the cell to the membrane breaks down. It gets stuck inside." Helquist and a team of other Notre Dame professors joined the search for a cure in 2005 after meeting with the Parseghians. Their group is one of 11 laboratories across the country currently being funded by the Parseghian Foundation. They receive some of the $40 million the foundation has raised during the past two decades. In June, they gathered with roughly 85 Niemann-Pick researchers from around the world in what has become an annual conference on Notre Dame's campus. And after 19 painfully slow years, the results are starting to come. Helquist's team collaborated with scientists from Cornell University to push a potential treatment into FDA trials. Their drug, which works in a ing strict guidelines is a tedious and grinding process that rarely offers the milestones of clear-cut victories. By the time Notre Dame's team started its research the Parseghians had buried the last of their three ailing children. Marcia died in 2005 at 16 years old. Michael, 9, and Christa, 10, passed away several years earlier. If there is some sliver of light to be drawn from their family's against-all-odds bad luck, it's that the Parseghians were uniquely well suited to start their push with relative quickness. Mike, an orthopedic surgeon, had connections in the medical world that helped quickly assemble a top-notch advisory board. Cindy received her MBA degree from Northwestern after graduating from Notre Dame and has piloted the foundation forward during the past 19 years. Ara was involved in the National Multiple Sclerosis Society during his coaching days (his family had a long history with the disease) and had a grasp of how these types of foundations function. He also lent his time and his name, which helped to create a strong and constant response from the Notre Dame community. "It's been by the seat of our pants," said Hundreds of well wishers celebrated Ara Parseghian's 90th birthday earlier this spring at an event that raised more than $300,000 for his medical research foundation. photo by Mike Bennett/Lighthouse imaging 144 ✦ Blue & Gold Illustrated 2013 Football Preview 144-147.Ara Parseghian.indd 144 6/25/13 3:30 PM