“Everyone has a finite amount of emotional, physical and (in our case) political capital, and we try to allocate that capital in the most aggressive way to secure funding for scientific research.”
Q
You and your wife, Dana, started the Foundation to Eradicate Duchenne after your son James was diagnosed in 2000 with Duchenne Muscular Dystrophy. Tell me about this condition and its impact on James.
A
DMD is a terribly cruel, muscle-wasting disease. It’s a single-gene defect disorder, but in James’s case it was not hereditary—just a spontaneous mutation. It afflicts 1 in 3,500 boys. He’s 26 now and hasn’t walked in 13 years, and he has a full-time personal care assistant.
Favorite Vacation Spot: My cottage in the Florida panhandle, or, as [Brown &Brown Chairman] Hyatt Brown calls it, “Lower Alabama.”
Favorite Movie: The Manchurian Candidate
Favorite Actor/Actress: Morgan Freeman
Favorite Musician or Musical Group: The Who
Favorite Book/Author: Willie Morris, author of North Toward Home
Favorite WDC Restaurant: Tosca
Favorite Dish at Your Favorite WDC Restaurant: Tonnarelli all’Amatriciana. Basically an elevated pasta with meat sauce.
Q
You helped the foundation raise more than $25 million in private donations and hundreds of millions in government funding. Tell me about those fundraising and legislative efforts.
A
Dana and I are blown away by the generosity of so many friends and in particular the kindness of so many Council member executives. Everyone has a finite amount of emotional, physical and (in our case) political capital, and we try to allocate that capital in the most aggressive way to secure funding for scientific research. Government funding barely existed for DMD when James was diagnosed, and there was no organized advocacy effort, despite DMD being the world’s number-one lethal childhood genetic disorder. We now have scores of wonderful champions on Capitol Hill who span the political spectrum.
Q
Has there been progress in our understanding of Duchenne over the past 23 years?
A
Tons. When James was diagnosed, there were no FDA-approved drugs for DMD and virtually no private research. There are now several approved drugs. The first-ever gene therapy drug was approved only months ago, albeit only for newly diagnosed boys. There are scores of drugs in the clinical trials pipeline. A total of about $8 billion has been invested by private industry, leveraged from governmental and philanthropic support. But it’s a tough disease that overtakes all skeletal muscle, and we need more ingredients in the cocktail that can slow or halt the progression of the disease. Life expectancy has more than doubled—it’s hard now to even say what the expectancy is.
Q
How is James doing today?
A
He’s a junior at Radford University in southern Virginia, has many friends, and is delightful. We are blessed.
Q
Who were your childhood heroes?
A
I was always into politics. In my Tennessee elementary school, I met Sen. Howard Baker and was taken with his charisma. Is it uncool for me to say I was a Nixon nut, too?
Q
What led you to become a lobbyist in Washington?
A
After being a newspaper reporter, I went to work on the Hill as press secretary for freshman Rep. Don Sundquist of Tennessee. (He went on to be a highly accomplished legislator and later governor and, sadly, passed away in August of this year.) I eventually moved over to the legislative side, and then Ken Crerar of The Council led me to my first junior lobbying job for a different insurance association. We’ve been together for 30 years now at The Council!
Q
What’s the hardest thing about working on Capitol Hill?
A
My daughter Julia works for a Republican senator,
so I live life vicariously through her. But when I started on the Hill in the ’80s, my work and personal friends were of all political stripes. Nowadays, you have to pick your team. The roots of political dysfunction lie deep in society, and they are reflected in the Capitol.
Q
What is something your co-workers would be surprised to learn about you?
A
That I’m a (sometimes) choir boy?
Q
Last question: What gives you your leader’s edge?
A
My staff is sick of the cliché, but I try to always remember that the foot I step on today is connected to the ass I have to kiss tomorrow.
