CARY — When her second child was born with Down syndrome, Michelle Pfeiffer found comfort in information. In between the blur of tests and treatments during those frightening early weeks, she educated herself on the disorder that would alter the course of her daughter’s life.
But she soon realized that many questions remained unanswered. And even more arose when 1-year-old Anna was diagnosed with leukemia, such as the reasons that Down syndrome improved her chances of survival.
So the Cary mom who left her corporate job to care for Anna and her two other children turned her considerable energy toward raising money for Down syndrome research at Duke University Medical Center, where Anna was treated.
Anna is now 11, a fourth-grader who thrives on her many friendships and activities such as cheerleading. And Pfeiffer expects the effort she and her husband started in their daughter’s name, Anna’s Angels, to reach its $1 million fundraising mark this weekend.
The nonprofit had raised $950,000 before Saturday’s 10th Annual Anna’s Angels Gala, a dinner and auction that in recent years has raised more than $100,000 at each event. The special guest this year was “Glee” actress Lauren Potter, who has Down syndrome; Potter will appear Sunday at Crabtree Valley Mall.
Dr. Priya Kishnani, whose research on Down syndrome has been funded by Anna’s Angels, says Pfeiffer’s efforts have helped her advance several strategies that otherwise might have gone unexplored; one medication aimed at improving cognition was recently funded for a larger trial.
“Michelle has made a real commitment to better the lives of people with Down syndrome,” says Kishnani, division chief for medical genetics at Duke’s department of pediatrics. “And she works so hard, putting her heart and soul into raising every dollar.”
A double shock
Pfeiffer, 44, was born in Maryland and lived in Connecticut for several years before moving to Raleigh when she was in high school, following her father’s job with ITT. He later worked at Nortel.
She graduated from Ravenscroft School and went on to college at N.C. State University, where she studied business and communication.
Eager to build her résumé, she participated in a variety of campus activities: writing and selling advertising for The Technician student newspaper; working as a disc jockey for the campus radio station; and taking a leadership role in a business club.
She always saw her career path as working up the corporate ladder, and she was on her way when Anna was born in 2001.
She was in her early 30s and working as a senior manager at MCI, the phone company that later became part of Verizon, where she was in charge of a national customer support center.
An early test had showed that her second child might be at a higher risk for Down syndrome, but later ultrasounds appeared normal.
So Anna’s birth with Down syndrome was a shock, Pfeiffer says, and the first few weeks were a trying flurry of medical interventions to detect and treat the conditions that often accompany the disorder.
As an infant, Anna went through several kinds of therapy and an eye operation. Doctors also discovered an issue with her white blood cells that indicated she was at risk of developing a specific type of cancer.
All along, Pfeiffer sought to understand more about her daughter’s condition, reading book after book and questioning her doctors.
“I think I felt a sense of ease reading and learning and knowing what I needed to do,” she says. “I do feel that there’s power in knowledge, and I just sunk into learning as much as I could.”
When Anna was 1, she was diagnosed with acute myeloid leukemia. She began an 8-month round of chemotherapy.
Pfeiffer was pregnant with her third child at the time and had Ashley while Anna was still in treatment. She recalls, with a laugh, the contrast of bringing her crying newborn into the cancer ward.
Anna survived, and Pfeiffer says the experience helped put Anna’s Down syndrome in perspective.
“The leukemia could have ended her life,” Pfeiffer says. “But Down syndrome is just part of who she is.”
She was also intrigued to find out that cancer patients with Down syndrome have a higher survival rate than others, and they require less medication.
But again, no one seemed to know why. She talked to her oncologist at Duke Medicine about these nagging questions, and Anna’s Angels was born.
Pfeiffer had left her beloved but demanding job to care for Anna; volunteer fundraising became her new focus.
“I felt like I had so much passion in me to do something,” she says. “I think I just turned it from that job to Anna’s Angels.”
A few days before Saturday’s gala, Pfeiffer was at her Cary home filling out name tags for the volunteers who would work the dinner for 200-plus people; next, she would tour the Triangle picking up items to be auctioned.
She says Anna’s Angels, much like her old job, tests her communication and problem-solving skills.
For months before, she had rounded up donations for the event’s auction; this year’s items included NASCAR tickets, an autographed Hurricanes jersey, several vacation packages, jewelry, wine, and more.
She started seeking Lauren Potter, who plays a cheerleader with Down syndrome on the popular Fox series “Glee,” with a Google search, and kept making calls until she got to the actress’ agent.
Anna’s Angels has also held 5K events and fashion shows, but the gala remains its main fundraiser. The proceeds have increased steadily since the first year, when it brought in about $10,000.
All of the money raised at the event goes directly to Duke; Anna’s Angels is registered as an arm of Duke Medicine’s nonprofit entity. For her efforts, Pfeiffer gets to help decide which grant projects are funded.
So far, the group has helped establish the infrastructure researchers would need to learn more about Down syndrome, including a bank of samples from people who have the disorder, who remain anonymous, along with a registry of their characteristics.
Her current focus is on research that explores the brain function and communication skills of people with Down syndrome.
Kishnani says Pfeiffer’s help has been crucial, particularly in doing the preliminary research needed to land ever-more-competitive government grants.
And she says it’s come at an important time in Down syndrome research. As doctors have learned to remedy the life-threatening problems that often accompany the disorder, the life expectancy of those who suffer from it has soared, leading to a need for more research into improving their lives beyond the early years.
“It’s been a mindset change to ask, what can we do to improve the lives of these individuals, to maximize their potential in society?” Kishnani says.
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