Until four days ago, not a single MBA student in
Room 160 had ever heard of the genetic developmental disorder called Rett syndrome.
Now they are consultants.
Charged with raising the profile on this rare and devastating condition, the students pitched ideas to a panel of three judges—all with Notre Dame roots—who were at the Mendoza College of Business because of their personal connection to this disease, for which there is no cure.
At the helm is Chuck Curley (’89), director of the International Rett Syndrome Foundation (IRSF), whose daughter, Caroline, was diagnosed in 2000. Following a normal pregnancy, birth and infancy, life took a harrowing turn when, at 18 months, Caroline inexplicably started losing her ability to move and vocalize. It would be almost four more years before they could put a name to the profoundly disabling disease that can destroy virtually every function in young girls, from speech to feeding; walking to breathing.
“You do a lot of grieving,” said Curley of
Norwood, Mass. “It is with you every single day.”
Curley’s heartache—and mission—intersected with some of Mendoza’s top graduate business
students on a sun-dappled day on campus last fall. He is joined by two other IRSF board members: Steve Gallucci (MBA ’93 ), a partner at Deloitte & Touche in New York and father of Olivia, diagnosed in 2001; and Jeff Stelmach (’89), executive vice president of experiential marketing for Ogilvy & Mather in Chicago and Curley’s roommate two decades ago at Morrissey Hall.
After graduation, Curley and Stelmach continued their close ties, finding jobs in advertising, moving to Oak Park, Ill., buying houses in the same neighborhood,
raising children and generally embracing a comfortable
life—which certainly did not include having children with severe disabilities. Once Caroline was diagnosed, nothing was the way it was before.
Said Stelmach: “The future looked so promising and then, in an instant, it got scary.”
The Curley family decided to move back to the Boston area, where they could lean on family support. Chuck Curley changed jobs, too. After years of
building a successful career in business-to-business advertising sales, he became the IRSF director. His managerial skills along with his ability to relate
to other parents made him a natural fit. “It was an opportunity to do something I was passionate about,” said Curley, who also has two sons.
His most rewarding accomplishment is to connect parents of newly-diagnosed girls with those who have walked the same path, watching them form their own networks of support. But working with the disease all day and then coming home to a child needing constant care and is up three or four times a night is draining, he acknowledged.
“Parents are crying … in an instant, all their hopes and dreams for their child have just vanished, replaced by day-to-day needs.”
Steve Gallucci was one of those parents. After the initial shock wore off, he became active in Rett circles, and in 2003 joined the IRSF board. The trio joined
together, focusing on unlocking the mystery of Rett—one of 6,000 or so “orphan diseases” in the United States, which are generally ignored by pharmaceutical companies because they don’t represent a large enough market to be profitable. For years, researchers could offer families little hope. Then, in 2007, scientists at the University of Edinburgh reversed symptoms in a mouse bred to display many of the outward signs of the condition. Moreover, the findings could shed light on other neurological disorders, such as autism and schizophrenia.
“We knew we were on the cusp of something big,”
said Gallucci, vice-chair of the IRSF, the leading private
funder of Rett syndrome research. “It is the absolute commitment of this board to push this forward.”
But more research called for raising serious money, and that was unlikely to happen unless
awareness rippled out beyond those personally touched by the disease. Rett syndrome occurs in about one out of every 10,000-15,000 female births.
To help build brand recognition, the three advocates
turned to the Notre Dame community, which they knew to be strong, well-connected and charitable. (“It’s in their DNA,” quipped Gallucci.) But how best to access this powerful network?
The dilemma came to the attention of Ed Conlon,
associate dean for graduate studies and Bill Brennan,
director of MBA Initiatives, who suggested that Mendoza’s graduate marketing students tackle the Rett challenge. The plan started to take shape in late August, with Stelmach volunteering to teach a class in non-traditional marketing for not-for-profits. In record time—two weeks to be exact—the curriculum moved from drawing board to course catalog. This was no small feat, considering that everything had to be approved not just by the business school, but by the Rett syndrome board and Ogilvy & Mather, which never before allowed such proprietary information about their methods to be shared.
“Everyone really wanted to make this happen,”
said Stelmach, explaining the accelerated timetable. “They were just so committed to the cause.”
The four-day, hands-on class is part of Interterm Intensives, an initiative that allows students to step away from their regular course work and immerse themselves in any one of 12 highly concentrated classes. It might mean getting the inside scoop from a venture capitalist, who shares what he’s looking for when he invests in a fledgling entrepreneur. Students are not just learning how to put a financial prospectus together; they’re actually doing it, said administrators.
Or, the podium might be turned over to a company—the roster has included Starbucks, Whirlpool, McDonald’s and IBM—to present a vexing problem in exchange for students’ ideas.
However, unleashing students on a horrific illness was different than the launch of a new product or acquiring a new property. After all, corporations have the resources to solve these problems on their own. But that’s not the case for an obscure disease with a limited budget that desperately needed marketing input, Conlon said. “Students could see that their
fundamental business skills have the power to make a difference in people’s lives, independent of revenue or profits.”
Judging by the blank stares that greeted Stelmach that first Monday in October, Stelmach wouldn’t have predicted such insight. But his students wasted no time channeling their energy into the project, searching for ways to use non-traditional marketing to create buzz, forge corporate partnerships and drive traffic—and donors—to the organization’s Web site.
“The value of the message is more significant
because it comes from a person you respect, as
opposed to mass media, such as a TV commercial,
a newspaper ad or a billboard,” explained the
executive-turned-instructor. “It’s about reaching
the consumer in a way that is fresh and unique
at a relatively low cost,” he said, adding that the Obama camp was particularly adept at using
grass-roots viral marketing to mobilize voters.
By Thursday, it was show time.
One by one, four teams pitched their presentations to Curley, Gallucci and Stelmach, who diligently scrawled notes on legal pads. The campaigns ranged from illuminating an entire town with lavender light bulbs (“doing for Rett what pink has done for breast cancer”) to flower giveaways at commuter train stations nationwide (so “girls can bloom to their full potential”). Keys and luggage tags beamed on the screen. Dolls—a variation on the IRSF logo—were also a recurring
motif. They were to be passed around the country,
both literally and virally via social networking sites.
One group spun a scenario of a princess caught in a castle—a metaphor for the girls being a prisoner of their bodies. The images may have been whimsical and feminine, but the information was all business nuts and bolts. Students bandied about terms like “return on investment” and “value of impressions,” but also conveyed a deep compassion for the stakeholders.
“I thought the ideas were really unique,” said Curley, after the presentation. “They seemed to really grasp the severity of the disorder. My daughter will never be able to hold a job or get married. She’ll never even be able to feed herself.”
In December, the campaigns were presented to the IRSF board in New York, which voted to combine the flower and princess ideas in summer 2009.
MBA student Bridget Battistone admitted that she was clueless about Rett but “honored and humbled” for the chance to improve the quality of life for the girls and their families, she said.
Four months after the class concluded, she still finds herself thinking about them.
“Usually, when you work on one of these campaigns, the objective is to sell a product and make more money. But here, we were able to use the same skill set to spread awareness, which, in turn, will help everyone touched by this disease. It’s definitely more meaningful than trying to sell another toothbrush.”
—BONNIE MILLER RUBIN writes for the Chicago Tribune.
Rett Syndrome Facts
|Rett syndrome is a severe, genetic disorder that
affects the way the brain develops.
The disorder occurs almost exclusively in girls and has been only generally recognized since 1983.
Most babies with Rett syndrome develop normally
at first, but their progress often slows by the time they reach 18 months of age.
Over time, children with Rett syndrome have
increasing problems with motor function that may
affect their ability to use their hands, speak, walk, chew and even breathe.
Most girls should live into middle age, but there are cases of afflicted girls passing in their teens or earlier.
No cure exists for Rett syndrome. Treatment focuses on improving movement and communication and providing care and support for affected children and families.
Find out more at Rettsyndrome.org
|Sources: IRSF, MayoClinic.com