Stars turn out for Lyme Research Alliance’s gala

At left, Debbie Siciliano and Diane Blanchard, at right, the co-founders and co-presidents of Lyme Research Alliance, flank Greenwich resident Gretchen Carlson.

At left, Debbie Siciliano and Diane Blanchard, at right, the co-founders and co-presidents of Lyme Research Alliance, flank Greenwich resident Gretchen Carlson.

More than 400 guests congregated in full force at the Lyme Research Alliance’s (LRA’s) annual Time for Lyme Gala on Saturday, April 5, at the Hyatt Regency Hotel.

The LRA boasts the title of the nation’s largest nonprofit funder of university-level research into Lyme and other tick-borne illnesses. That night, the organization raised over $1 million to fund medical research for Lyme disease, in an exciting event featuring cocktails, dinner, dancing, and both live and silent auctions. The evening was a star-studded affair, with honorary chairs former baseball player and New York Mets manager Bobby Valentine, actress Jane Alexander, and award recipient and WNBA all-star Elena Delle Donne in attendance.

Greenwich resident Gretchen Carlson, anchor of Fox News daytime show The Real Story with Gretchen Carlson, served as mistress of ceremonies for the evening. In her introductory remarks, she candidly discussed her personal story with Lyme disease, one frustratingly characterized by a series of misdiagnoses.

“It’s a bittersweet experience for me to be here tonight. I’m here because I’m also a Lyme disease sufferer,” said Ms. Carlson.

She said she knows firsthand the challenges of obtaining a proper diagnosis and effective treatment for the disease. Late diagnosis exponentially increases the possibility of adverse symptoms and long-term illness. A year ago, when Ms. Carlson first noticed the trademark rashes of the illness and began experiencing migraines and exhaustion, she felt that something was terribly wrong. But despite the assurances of several individuals that she had Lyme disease, all of her preliminary tests came back negative, flummoxing doctors and Ms. Carlson herself.

It turns out that this confusing phenomenon is all too common. Countless others have undergone similar situations, because there is no definitive test for Lyme disease, and as a result, no single prescribed method of treatment. Misdiagnoses are rampant, and the longer the disease is left untreated, the more severe and lasting the effects can be.

Because of this, the LRA is fighting to build awareness for the disease, and campaigning to try to continue to raise money to fund scientific research in search of greater understanding, and ultimately, a cure.

U.S. Sen. Richard Blumenthal (D-Conn.) and First Selectman Peter Tesei attended the event in support of the LRA. Mr. Blumenthal, a Greenwich resident, thanked the organization for its hard work, which he called phenomenal and necessary. He stressed the importance of hearing the “powerful and important” stories of Ms. Carlson and so many other sufferers of this “dreaded and pernicious disease.”

“We are using medicine that dates from 30 years ago,” Mr. Blumenthal said. “We are using a lot of the techniques and treatments for diagnosis that are way out of date. Being here tonight, you are not only sending a message and a signal but accomplishing a lot for the diagnosis. It’s underdiagnosed, the reporting, it is way underreported, and treatment, it is treated with methods that are out of date and that we need to improve.”

Mr. Blumenthal added that stories like Ms. Carlson’s need to become things of the past.

“People should not be getting this disease anymore,” Mr. Blumenthal said.

LRA co-founders Dianne Blanchard and Debbie Siciliano then took to the podium. The pair had come to know the disease “on a very personal level,” witnessing their children deal with the illness. They’re passionate about preventing other children from falling victim to Lyme, and to bringing the most cutting-edge research firmly to the forefront.

“We are part of a family, and as Gretchen said, we’re here tonight because all of us have been touched by Lyme, and together, we will get this figured out,” said Ms. Siciliano.

Since LRA’s inception in 1998, it has raised millions of dollars for medical funding and research. It has forged partnerships with universities and the academic community to support scientific research. In 2007, in partnership with the Lyme Disease Association, the LRA created the first research program for the study of persistent Lyme, at Columbia University Medical Center. All of these strides have been made possible through the generosity of individuals, foundations and corporate sponsorships.

The Time for Lyme Gala is the nonprofit’s major fund-raising event of the year, and Ms. Blanchard and Ms. Siciliano set an ambitious goal of raising $1 million, which they reached. The pair thanked the scientists and medical professionals who work with LRA for taking their vision, sharpening its focus, and bringing it to life. LRA’s chief scientific officer, Harriet Kotsoris, presented the Lauren Brooks Hope Award to two doctors, Ying Zhang of Johns Hopkins University and Kim Lewis of Northeastern University. Both doctors, whom she called “pioneers in the field of microbiology,” have been devoted to the study of persistent Lyme disease.

“Both Dr. Lewis and Dr. Zhang’s research is answering the ‘why, when and how’ about ‘persistors.’ Their efforts are paving the way to revolutionize Lyme disease, and for that, they give us hope,” said Dr. Kotsoris.

Dr. Lewis was unable to attend because of a medical conference, but Dr. Zhang addressed the audience, asking people for their continued support of research.

“It’s your support that has made our effort possible to develop a better cure for Lyme disease. … There is indeed hope on the horizon, but we need your support,” said Dr. Zhang.

Elena Delle Donne was then honored with the LRA’s Starlight Award, created to honor individuals who have battled Lyme disease and courageously “stepped forward” to highlight awareness. The 24-year-old is a basketball player with the Chicago Sky and 2013 WNBA Rookie of the Year, but has been sidelined twice by Lyme.

During her flare-ups, she was left adrift, wondering if she’d ever be able to play basketball again or even graduate from college. Her harrowing story echoes that of Ms. Carlson. Countless doctors assured her that she was perfectly healthy, that she was depressed, even that she potentially had a brain tumor. Ultimately, she was able to get properly diagnosed and treated, but what she finds most troubling is that her story is not the case for most.

“I think of how many people at this very moment have Lyme and are still on the diagnosis odyssey right now. … If they ever get properly treated and diagnosed for Lyme, it may be too late,” said Ms. Delle Donne.

She now believes that the tick found her with a purpose. She is dedicated to sharing her story, in the hope of inspiring “fellow Lymies who may feel like giving up.” Her goals don’t end at merely building awareness but are to beat the disease. Not just for her own sake but for the children with Lyme who are “stripped of their childhoods,” with symptoms taking the place of laughter and joy.

“We must find a cure, not for myself but for other children who are staring at a handful of pills. We can make a big difference here tonight,” said Ms. Delle Donne.

The LRA hopes that one day, all doctors will be Lyme-literate, and that stories like those of Ms. Delle Donne and Ms. Carlson will be avoided by future generations. They’re hoping for a new beginning, a test, and a cure. Thanks to the support of the community, perhaps this day is soon coming.

“It’s a battle I’ve chosen to fight. I’m not going to stop until it’s fought. There are other illnesses that have been cured. Why can’t Lyme be the next?” asked Ms. Delle Donne.

 

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