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Gift helps launch U.S. center to study Lyme disease

"If you live anywhere from Maine to Virginia, it's almost impossible for Lyme disease not to affect someone you know," says center director John N. Aucott, MD
Posted August 8, 2016
Alex Mason and Dr. John Aucott Alex Mason and Dr. John Aucott

First discovered in Lyme, Connecticut, 40 years ago, Lyme disease has spread rapidly in the United States, most aggressively on the Eastern Seaboard, northern California, and in the upper Midwest.

Today, it afflicts more than 300,000 people per year, making it the sixth most common reportable infectious disease in the United States. Research into its causes and cures of both the acute and chronic manifestations of Lyme disease now has its first home based at a major U.S. academic department of medicine, thanks to a dedicated group of volunteers and a new multimillion dollar gift from the Lyme Disease Research Foundation.

The Johns Hopkins Lyme Disease Clinical Research Center is mounting an ambitious research, fundraising, and communications campaign to take on the disease, which costs the U.S. economy up to $1.3 billion per year in treatment care alone.

Leading the fight are foundation founder and director of the center, John Aucott, MD, (Med '84), and Alex Mason, foundation president who now serves as chairman of the newly created Hopkins center advisory board.

Rising recently sat down with the two to talk about their goals for the center, what keeps them up at night, and why they're confident that joining forces with the scientists and clinicians in the No.1-ranked Hopkins division of Rheumatology can make the difference in improving diagnosis and treatment.

What's your interest in Lyme disease?

Aucott: After my internal medicine training at Hopkins, I was able to advance my training with an infectious disease fellowship at Case Western Reserve and I later became part of their faculty. I returned to Hopkins in 1996 and started to work on the difficult Lyme disease cases. I developed a reputation as a "go-to guy" and have now been involved with Lyme disease research and treatment for over a decade.

Mason: I had the disease — some might say I still have the disease. I met with John after suffering for a long period of time with a series of difficulties for which no doctor could come up with a suitable diagnosis. He tested me and eventually started to treat me. Some long term effects are still with me, but I am much better thanks to John’s work. He's the reason I got better, and his leadership puts the Center in a position to benefit all those afflicted with the disease, not just the few of us fortunate enough to be directly under his care.

What can the newly created board bring to Hopkins?

Aucott: The new advisory board is a work in progress. Our focus is to bring in new members from areas of the country affected by disease. We want a group of responsible, dedicated, and involved people who can advocate for the center and help us raise money and awareness on a national scale.

Mason: The advisory board has three important roles:

The most obvious is fundraising. We want the center to be supported well beyond the scope of the original foundation gift.

We need to grow the center with advisory board members of diverse backgrounds who can benefit the center, complement John's skill set, and help him and his team at Hopkins become more successful from both an organizational and a fundraising standpoint.

And finally, the board offers a wonderful way to get the word out. Members of the board will obviously have a vested interest in the fight against Lyme disease. We’re looking for people who are passionate and can partner with us in transforming the center into a national leader in research and education.

What's next?

Aucott: We're fortunate to have received the generous gift from the Lyme Disease Research Foundation. If you were talking about a technology company, it is the equivalent of us moving out of the garage and into the main building. This is a great start, but we really only have one room of the building so far.

Mason: Awareness is a critical element moving forward. There is a lack of appreciation for how widespread this disease has become. The CDC last year raised its estimate of the number of cases of Lyme disease annually diagnosed from 30,000 to 300,000.

It's time to get in front of the disease before it infects more of the population. The only way we'll be able to do that is to bring the kind of money for research that we saw when we started to battle diseases like AIDS. That mobilization needs to happen quickly because Lyme disease is spreading — and it's insidious.

Learn more about how you can give to the Lyme Disease Clinical Research Center.