Support for Down Syndrome
By Sally Anne Flecker
Story originally published in fall 2014.
The week or so between learning that his second child might have Down syndrome and the actual prenatal diagnosis was one of the most difficult times in Mike Mannor’s life. He struggled with “massive uncertainty,” he says. But once he and his wife had a definitive diagnosis, he felt tremendous peace. “This was going to be the path for our family, and I felt very confident that we would be able to handle it and be the best parents we could be,” he says. He got right to work, learning everything he could. Happily, the assistant professor of management found, in contrast to earlier times when children with Down syndrome were often institutionalized, he could expect his daughter Sophia to grow up at home and be educated in a mainstream classroom with support to help her succeed. As Mannor dug deeper, he caught wind of huge advances on the horizon.
In the past, the cognitive limitations caused by Down syndrome had been considered too complex for research. “At a genomic level, Down syndrome is the presence of an extra copy of the 21st chromosome.” Mannor says. But several years before Sophia’s birth in 2008, the research climate became more promising. For one thing, the human genome had been fully mapped. Second, a new mouse model for Down syndrome gave scientists a way to study basic dynamics. The third development was a better understanding of neuroplasticity — the ability of the brain to change over time. That combination led to new research for the development of drug interventions with the potential to improve memory, learning, and social awareness for people with Down syndrome.
“I started poking around to see who was doing this work and how families of Down syndrome could help,” says Mannor. He connected with Research Down Syndrome (RDS), a private foundation based in Chicago supporting Down syndrome research. As it happened, RDS was founded by venture capitalist Dan Flatley (ND ’75) and headed up by genetics researcher Robert Schoen (ND ’75).
Here’s where Mannor, who teaches business strategy in the MBA program, was uniquely equipped to be of service. “With the mission of Mendoza being Ask More of Business™, we look for opportunities to help out different kinds of organizations,” says Mannor. Each year, RDS presents Mannor’s students with a set of research questions on important strategic initiatives. Mannor assigns groups of students to work on the questions. “And then Dr. Schoen comes to campus each year and gets the students’ ‘A’ game,” Mannor says. “This is an important way to learn about real-world problems and apply the tools from the strategy class to provide value to an organization.”
Three years ago, Mannor found another way to contribute — with a big fundraiser called A Night of Art & Blues. The annual event includes a live blues band, raffles, premium bar and an artist creating works of art on the spot. One year it was huge paintings, another year chainsaw ice sculpting. Mannor and his crew of about 15 volunteers, mostly from the Notre Dame community, have been quite successful. To date, they’ve raised more than $120,000 for Down syndrome research.
In the meantime, Sophia is a happy little girl. She’s just turned 6 and has entered first grade — one of many milestones to come. It’s her father’s hope that the work he’s doing to support research will pay off in terms of a future that includes more opportunity and the ability to live productively and independently for Sophia and all people with Down syndrome.