Eleven years ago, when Debra Miller's son Hawken was 5 years old, doctors diagnosed him with Duchenne, a rare type of muscular dystrophy that leads to a loss of muscle cells; severe medical complications typically occur in early adulthood and cause irreversible lung and heart catastrophes. Instead of following the advice to go home and love their son, giving up hope for a cure, Miller and her husband instead created a nonprofit organization called CureDuchenne.
As the foundation's chief executive officer, Miller devotes most of her time, energy and sanity to the efforts of finding a cure for her son's so-far-incurable disease. She personally signed off on the nonprofit giving $1.3 million in contributions to a small, Netherlands-based scientific research company.
"Oh, we were scared to death when we signed the contract, but we knew we were going to do it," Miller recalls. "At that point, we could not see where the funding was going to come from, but we believed so strongly in science. . . . If I could open up my body and give him every ounce of muscle that I have, I would do it."
The Millers had only a fraction of the cash saved, so they resorted to begging, borrowing and fund-raising to come up with the rest, a process that took two years. Miller's next move required her to utilize her past and her savvy business experience to push forward. A UCLA graduate with a bachelor's degree in communication studies, Miller had climbed the corporate ladder, working for a PC magazine and earning upward of $300,000 per year. (After her son was born, she left her job to be a stay-at-home mom.)
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Under her direction, CureDuchenne attracted several well-placed yet small investments that ultimately attracted much larger contributions from venture-capital companies, which snowballed into hundreds of millions of dollars being invested into drugs with life-saving potential.
Although her husband supports the foundation's efforts, he spends four days of the week working in San Antonio, Texas. Meanwhile, Miller provides home care for her son, cooking, cleaning, nurturing his curiosities and helping him with simple, everyday tasks. When she's not being a mom, she focuses on planning awareness events, fund-raising millions of dollars and tracking the science of a rare muscular disease that remains incurable.
Miller's goal is simple: She wants to close up shop, and she wants boys with Duchenne to live long, normal lives. "I just want Hawken to be a good dad," she says. "I just want him to have the joy he brought to us. There is nothing like it, absolutely nothing like it, and that's my biggest dream."