LivLyme Foundation Puts a Fresh Face on Lyme Disease
By Melissa Mayer
Since its inception just two years ago, the LivLyme Foundation has provided research grants to three scientists studying Lyme disease and helped 31 families afford medical care for their children—totaling more than $1 million in charitable donations. It’s an impressive feat, but when this organization’s founder flips through the 265 grant applications to pick the year’s recipients, she’s doing so between her literature and Spanish finals. That’s because LivLyme Foundation founder Olivia Goodreau is a high school freshman.
The LivLyme story begins much earlier. When Olivia was just 6 years old, she received a tick bite. Since she didn’t have the classic bullseye rash, Olivia’s diagnosis of Lyme disease wasn’t straightforward, and when she continued to have symptoms after treatment—a condition called Post Treatment Lyme Disease Syndrome, which is recognized by public health organizations like the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) but is poorly understood—Olivia’s family struggled to find answers.
Between having her symptoms dismissed as malingering and hearing of a family living in their car to afford the son’s medical treatment, 12-year-old Olivia wanted to do something big to help other kids like her. So, the LivLyme Foundation was born. Through the organization, Olivia and her family host fundraising galas and concerts, put on an annual summit with expert panelists, and even lobby in Washington, DC. (more on that later).
They also developed TickTracker, an app that allows users to report tick encounters and receive notifications when they venture into areas with tick activity. It’s available in English, French, and Spanish (Mandarin coming soon) and has seen 20,000 free downloads so far. The app was recently showcased during the U.S. Census Bureau’s 2019 TOP Demo Day and recognized as a top innovation by the American Society of Tropical Medicine and Hygiene.
Lyme in the Lab
One researcher understands Olivia’s story all too well. Shortly after finishing her post-doc training at Yale’s School of Medicine, Eva Sapi, Ph.D., accepted a faculty position at the University of New Haven. There in Connecticut, the same state where the illness was originally discovered, the researcher found herself battling Lyme disease.
“I was really sick. I was probably as sick as Olivia,” Sapi explains. “I thought I was dying.” It’s an experience that stuck with the researcher and spills into her work. “I understand everything when patients sometimes call me and ask what to do,” she says. “When they are describing the symptoms, I know exactly how that feels.”
Sapi was sick for two years, and when she recovered, she shifted her research focus from the saturated field of cancer genes, which commands research budgets in the millions, to Lyme disease, for which she received only a few thousand dollars in university funding back in 2006. But she wasn’t short on tenacity—and she says that’s not unusual in this field: “In Lyme research, we have a couple people who came to the field because they had Lyme, and I think they are the most passionate.”
That intrepid spirit paid off for Sapi, who discovered that the Borrelia bacteria responsible for Lyme disease form biofilms, a protective layer that helps the bacteria resist antibiotics and could even explain why some patients with Lyme have persisting symptoms after treatment.
Cranking Up the Funding
And that’s where the two stories merge. Since public funding was scarce, Sapi relied on private foundations to support her work and, in 2018, that included the LivLyme Foundation. “You need private foundations who believe in you and provide some funds so you can at least look at it and get those steps to publication out,” says Sapi. In the past year, that funding enabled her to publish four papers on Borrelia biofilms and mixed biofilms.
Another LivLyme Foundation grant recipient, Ying Zhang, M.D., Ph.D, who studies drug resistance and persistence of Borrelia at Johns Hopkins, agrees. “Grants from Lyme disease foundations—especially Cohen Foundation, Global Lyme Alliance, Bay Area Lyme, and LivLyme Foundation—are crucial to support this type of innovative, unconventional, high-risk early-stage research we are conducting that is not supported by NIH,” Zhang says.
That may be changing, thanks to the Kay Hagan Tick Act. Remember that lobbying Olivia was doing? Alongside the Entomological Society of America and numerous scientific, medical, and patient-advocacy organizations, she helped push the bipartisan effort, which positions Lyme disease and other tick-borne illnesses as a public health threat, citing an exponential rise in confirmed cases from 30,000 in 2003 to 450,000 in 2018.
The Act, which honors former Senator Kay Hagan who died from tick-borne Powassan virus in 2019, will secure $150 million in new federal funding for tick-borne diseases through 2029, including $20 million dollars per year in CDC grants for researchers like Sapi and Zhang.
Sapi thinks we are on the long path to a cure—or maybe a cocktail of cures to treat Lyme and related co-infections—and that an important step toward that goal was finally recognizing that the traditional antibiotic for treating Lyme isn’t enough. “I hope what we did in the last 10 years provides some example that when something’s not working, it needs to be looked at differently,” she says.
And Olivia? She’s hoping to work herself out of a job before she’s even old enough to have one. “My goal is to end the foundation,” she laughs. “My goal is to say, ‘All right. There is now an affordable cure for Lyme disease and other tick-borne illnesses, and I’m gonna go to the beach right now. I’ll see you later!'”
Melissa Mayer is a freelance science writer based in Portland, Oregon. Email: firstname.lastname@example.org.