The Council’s Focus Has Special Meaning to Members
The Council’s charitable giving is targeted to the Foundation to Eradicate Duchenne (FED). Duchenne Muscular Dystrophy is the world’s leading lethal childhood genetic disease.
The charitable organization was established in 2002 by Dana and Joel Wood, with the goal of finding treatments and an ultimate cure.
Their son, James Wood, was diagnosed in May 2000 with DMD at the age of two; the diagnosis was the result of a “spontaneous mutation” that couldn’t have been predicted. Joel Wood is the senior vice president for Government Affairs at The Council, so the charitable organization has special meaning to The Council staff and many of its members.
The Woods, both Washington lobbyists, have devoted much of their time and energies to the organization. The foundation has raised more than $10 million in private donations and $60 million in direct federal appropriations for research since their son was diagnosed. Wood spearheaded efforts that led to the enactment of the Muscular Dystrophy CARE Act of 2004, which has dramatically increased the focus of the National Institutes of Health on the disease.
The Woods’ efforts have directed money to research centers and a clinical trials network all over the world. The charity’s top scientific advisor is Dr. Eric Hoffman of Children’s National Medical Center in Washington. Hoffman was the first scientist to identify and clone the dystrophin gene, which causes Duchenne. He says that, before the Woods got involved, “there was almost no government support…and the drug companies weren’t doing anything either…They were looking for (financial) blockbusters.” And the National Institutes of Health “was focused on a cause, not a cure,” he says. Today, there are more than 30 drug trials being conducted around the world to find a cure for the condition.
Before the Woods got involved, the average boy died around age 18. Today, with corticosteroids and other treatments, they live several years longer, he says. If all goes well, Hoffman says, a drug should be ready for use in two to six years. Drug trials in Europe and elsewhere, “are fairly compelling. Some of the kids are actually getting better.”
“None of that would have happened if it wasn’t for Joel and Dana,” Hoffman says.
Today, James is a popular 14-year-old eighth grader, confined to a wheelchair, but with high hopes for a bright future.
Wood says that Council members and staff have been “so incredibly generous to our family and this cause; without their support, encouragement and, yes, contributions, none of this would have been possible. Dana and I are deeply, deeply grateful. I work for the most incredible people. Their success in business is a reflection of their astonishing, giving character.”