Health The LivLyme Foundation presents a New Face to Lyme...

The LivLyme Foundation presents a New Face to Lyme Disease

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<img aria-descriptionby = "caption-attachment-12767" data -tachment-id = "12767" data link = "https://entomologytoday.org/2020/01/29/livlyme-foundation-puts-a-fresh -face-on-lyme-disease / olivia-goodreau-and-ying-zhang / "data-orig-file =" https://i0.wp.com/entomologytoday.org/wp-content/uploads/2020/01 /Olivia-Goodreau-and-Ying-Zhang.jpg?fit=1000%2C667&ssl=1 "data-orig-size =" 1000,667 "data-comments-open =" 1 "data-image-meta =" {" "Aperture": "3.5", "credit": "," camera ": Canon EOS 5D Mark III", "caption": "", "create_timestamp": "1509703659", "copyright": "," word_length ": "50", "iso": "1250", "shutter_speed": "0.00625", "title": "", "trends": "1"} "data-image-title =" Olivia Goodreau and Ying Zhang "data -image-description = "

Zhang Ying, M.D., Ph.D. (right), professor of Molecular Microbiology and Immunology at Johns Hopkins Public Health School Bloomberg received a research grant from the LivLyme Foundation, founded by Olivia Goodreau (left). (Photo courtesy of the LivLyme Foundation)

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Zhang Ying, M.D., Ph.D. (right), professor of Molecular Microbiology and Immunology at Johns Hopkins Public Health School Bloomberg received a research grant from the LivLyme Foundation, founded by Olivia Goodreau (left). (Photo courtesy of the LivLyme Foundation)

With Melissa Mayer

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Melissa Mayer

“data-medium-file =” https://i2.wp.com/entomologytoday.org/wp-content/uploads/2019/05/Melissa-Mayer.jpg?fit=125%2C181&ssl=1 “big data- file = “https://i2.wp.com/entomologytoday.org/wp-content/uploads/2019/05/Melissa-Mayer.jpg?fit=125%2C181&ssl=1” class = “wp-image full size -11240 “src =” https://i2.wp.com/entomologytoday.org/wp-content/uploads/2019/05/Melissa-Mayer.jpg?resize=125%2C181&ssl=1 “alt =” Melissa Mayer “width = “125” height = “181” srcset = “https://i2.wp.com/entomologytoday.org/wp-content/uploads/2019/05/Melissa-Mayer.jpg?w=125&ssl=1 125w, https: //i2.wp.com/entomologytoday.org/wp-content/uploads/2019/05/Melissa-Mayer.jpg?resize=55%2C80&ssl=1 55w “size =” (maximum width: 125px) 100vw, 125px “data -recalc-dims = “1” />

Melissa Mayer

Since its inception two years ago, the LivLyme Foundation has provided research grants to three scientists studying Lyme disease and has helped 31 families to provide medical care to their children – worth over $ 1 million. in charitable donations. It is an impressive exercise, but when the founder of this organization rejects the 265 grant applications to select the recipients of the year, she is doing so between her literary and Spanish finals. That’s because Olivia Goodreau, the founder of the LivLyme Foundation, is a new man.

Background Olivia

LivLyme’s story starts much earlier. When Olivia was just 6 years old, she got a tick. As she did not have the classic hunting rash, Olivia’s diagnosis of Lyme disease was not straightforward, and when she followed symptoms after treatment – a condition known as Lyme Post-Treatment Disease Syndrome, which is recognized by public health organizations as National Institutes of Health (NIH) and Disease Control Centers (CDCs) but are not well understood – Olivia’s family had difficulty in getting answers.

Between her false symptoms and listening to a family who lived in their car to treat the son, Olivia, aged 12, wanted to do something great to help other children. So, LivLyme Foundation was born. Through the organization, Olivia and her family host fundraising gilts and concerts, set up an annual summit with panel experts, and even in Washington, DC. (more on that later).

They also developed TickTracker, an application that allows users to report ticket reports and receive notifications when they enter areas with tick activity. It is available in English, French and Spanish (Mandarin coming soon) and there are 20,000 free downloads to date. The app was recently displayed during TOP’s TOP Demo Day of the 2019 Bureau and was recognized as the best innovation by the American Society of Medicine and Technical Hygiene.

Lyme in the Lab

One researcher understands that Olivia’s story is too good. Shortly after completing her post-document training in Yale Medical School, Eva Sapi, Ph.D., took up a faculty position at the University of New Haven. In Connecticut, the same state where the illness was first discovered, the researcher found herself struggling with Lyme’s disease.

“I was really sick. I suppose I was so ill with Olivia, ”explains Sapi. “I thought I was dying.” It is an experience that was stuck with the researcher and spilled into her work. “I understand everything when patients call me sometimes and ask what to do,” she says. “When they are describing the symptoms, I know exactly how it feels.”

Sapi was ill for two years, and when she returned, she moved her research focus from the saturated range of cancer genes, which dictates research budgets in millions, to Lyme’s disease, that she received only a few thousand dollars in university funding. 2006. But she wasn’t too confident – and she says it’s not unusual in this area: “In Lyme’s research, we have a couple who came to the field because they had Lyme, and I think they are very passionate. ”

The swift spirits paid out of Sapi, who discovered that there was Borrelia bacteria responsible for Lyme diseases such as biofuels, a protective layer that helps the bacteria prevent antibiotics and may explain why symptoms are still with patients with Lyme after treatment.

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In December 2017, Olivia Goodreau gave evidence to the Department of Health and Human Services Working Group of the Department of Health and Human Services in Washington, DC. (Photo courtesy of the LivLyme Foundation)

“data-medium-file =” https://i1.wp.com/entomologytoday.org/wp-content/uploads/2020/01/Olivia-Goodreau-in-DC.jpg?fit=390%2C580&ssl=1 ” data-big-file = “https://i1.wp.com/entomologytoday.org/wp-content/uploads/2020/01/Olivia-Goodreau-in-DC.jpg?fit=672%2C1000&ssl=1” class = “average wp-image-12766” src = “https://i1.wp.com/entomologytoday.org/wp-content/uploads/2020/01/Olivia-Goodreau-in-DC.jpg?resize= 390% 2C580 & ssl = 1 “alt =” Olivia Goodreau to DC “width =” 390 “height =” 580 “srcset =” https://i1.wp.com/entomologytoday.org/wp-content/uploads/2020/01 /Olivia-Goodreau-in-DC.jpg?resize=390%2C580&ssl=1 390w, https://i1.wp.com/entomologytoday.org/wp-content/uploads/2020/01/Olivia-Goodreau-in- DC.jpg? Change size = 54% 2C80 & ssl = 1 54w, https://i1.wp.com/entomologytoday.org/wp-content/uploads/2020/01/Olivia-Goodreau-in-DC.jpg?w=672&ssl = 1 672w “size =” (maximum width: 390px) 100vw, 390px “data-recalc-dims =” 1 “/>

In December 2017, Olivia Goodreau gave evidence to the Department of Health and Human Services Working Group of the Department of Health and Human Services in Washington, DC. (Photo courtesy of the LivLyme Foundation)

Funding the Funding

And that’s where the two stories go together. As public funding was scarce, Sapi felt private foundations to support her work and, in 2018, included the LivLyme Foundation. “You need private foundations that you believe and provide some funds so that you can view and publish these steps to discover,” says Sapi. Over the past year, this funding has enabled the publication of four papers Borrelia biofuels and mixed biofuels.

Another recipient of the LivLyme Foundation, Ying Zhang, M.D., Ph.D, who study drug resistance and survival Borrelia at Johns Hopkins, agrees. “Grants from Lyme disease foundations – particularly from the Cohen Foundation, Global Lyme Alliance, Bay Area Lyme, and the LivLyme Foundation – are crucial to supporting this kind of innovative, high-risk, innovative research that NIH does not support . , ”Says Zhang.

Looking Forward

This may be changing, thanks to Kay Hagan’s Tic Act. Remember that Olivia was lobbying? In addition to the American Entomology Society and many scientific, medical and advocacy organizations, it helped to drive the bipartisan effort, which poses Lyme diseases and other illnesses carried through a box as a public health threat, citing a 30,000 increase in cases. from 30,000 in 2003 to 450,000 in 2018.

The Act, which honors former Senator Kay Hagan who died from a tick-borne Powassan virus in 2019, will ensure $ 150 million in new federal funding for tick-borne diseases through 2029, including $ 20 million dollars against year in CDC grants for researchers such as Sapi and Zhang.

Sapi feels that we are a long way to cure – or there may be a cure for treating Lyme and associated infections – and that it is an important step towards that goal to finally recognize it. enough the traditional antibiotic to treat Lyme. “I hope that what we have done over the last 10 years provides an example when something is not working, that it has to be looked at differently,” she says.

And Olivia? She hopes to work herself out of work before she is even old enough to get a job. “My goal is to end the foundation,” laughs. “My goal is to say,‘ All right. There is now an affordable medicine for Lyme disease and other tick-borne diseases, and I am now going to the beach. I’ll see you later! ‘

Melissa Mayer He is an independent scientific writer based in Portland, Oregon. Email: [email protected].

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