Bay Area Lyme Foundation Tick Testing Program Adds Bartonella Pathogen Assay

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Tick Testing Program Adds Bartonella Pathogen Assay

Nationwide Free Tick Testing Initiative Will Inform Citizen-Science Studies to Better Understand the Spread of Ticks Carrying Diseases Throughout U.S.

Silicon Valley, CA, July 11, 2019 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., today announced the relaunch of its nationwide free tick testing program, which will include an assay for Bartonella, a disease-causing pathogen carried by ticks. Based on the success of the Free Tick Testing Citizen Science program, Bay Area Lyme Foundation has significantly increased funding for the 2019 nationwide collection effort, adding an automated submission process and increased research support. Researchers anticipate this citizen- science program will enable the organization to unearth further discoveries.

Results of the first citizen-scientist study were published in the peer-review journals PLOS ONE in 2018, and International Journal of Health Geographics in 2019. The study, which evaluated the prevalence of disease-carrying ticks throughout the United States, and included a massive sample of more than 16,000 ticks collected from 49 U.S. states and Puerto Rico, led to the discovery of ticks capable of carrying Lyme and other tick-borne diseases in 83 counties, in 24 states, where these ticks had not been previously recorded. The program received a six-fold increase in tick submissions over initial estimates, representing unprecedented national coordination of a ‘citizen science’ effort and diagnostic investigation.

“The tremendous response to our initial collection program from residents all across the country has demonstrated a national desire for a greater understanding of tick-borne diseases, compelling our increased commitment,” said Linda Giampa, executive director at Bay Area Lyme Foundation. “Through a greater understanding of tick-borne disease risk across the U.S., we hope to better arm patients, clinicians and researchers with valuable insight in hopes of improved education, faster diagnosis, and more informed research toward making Lyme and other tick-borne illnesses easy to diagnose and simple to cure.”

As the only national free tick testing service, the program is designed to offer insights into the pathogens carried by ticks, and the results, in addition to any symptoms, should be discussed with a healthcare provider. Results from the tick test are not intended to be a diagnostic and individuals should discuss any symptoms or changes in health status with their physicians, as some tick bites will not transmit agents that cause disease. Since the founding  of the program in 2016, institutions and local government entities across the U.S. have been inspired to initiate similar free tick testing programs for the purpose of diagnostics and/or research.

Testing is available through a partnership with the Nieto Lab at Northern Arizona University, which will accept ticks from any state in the U.S. Ticks will be tested for six pathogens: Borrelia burgdorferi, which causes Lyme disease; Borrelia miyamotoi, which causes hard tick-borne relapsing fever; Anaplasma phagocytophilum, which causes human granulocytic anaplasmosis; Rickettsia rickettsii, the agent of Rocky-mountain spotted fever; the protozoan pathogen, Babesia microti; and Bartonella spp. Results will be available within twelve business days of receipt based on estimated volumes. The data will be reported to the sender by email, as well as added to our national database, to better understand ticks and tick-borne diseases.

“We are investigating changing trends in tick-borne diseases, and hope that improved understanding of the geography of human exposures to ticks and pathogens will revamp current perceptions of disease risk and the ticks’ spatial distributions,” said Dan Salkeld, PhD, research scientist, Colorado State University, who will be involved in evaluating data obtained from this program for potential future research publications.

U.S. residents seeking more information should visit: https://www.bayarealyme.org/lyme-disease-prevention/tick-testing/

About Bartonella
Bartonella are intracellular parasites that are transmitted by the bite of infected Ixodes ticks to humans, and infect red blood cells, macrophages, and endothelial cells. Symptoms of bartonella may consist of swollen or enlarged lymph nodes and may cause fevers and, more rarely, eye disorders, or infections of the liver, spleen, or bones. Many patients also experience an inflamed blemish at the transmission site which looks like a red bump on the skin and then may develop into a large pimple. Neurological involvement may also occur. There is a great need for an effective diagnostic and treatment for bartonella, and currently the most reliable assay for bartonella infection is through polymerase chain reaction (PCR) in blood, spinal fluid, and tissue.

About Bay Area Lyme Foundation
Bay Area Lyme Foundation, a national organization committed to making Lyme disease easy to diagnose and simple to cure, is the leading public not-for-profit sponsor of innovative Lyme disease research in the US. A 501c3 non-profit organization based in Silicon Valley, Bay Area Lyme Foundation collaborates with world-class scientists and institutions to accelerate medical breakthroughs for Lyme disease. It is also dedicated to providing reliable, fact-based information so that prevention and the importance of early treatment are common knowledge. A pivotal donation from The LaureL STEM Fund covers overhead costs and allows for 100% of all donor contributions to Bay Area Lyme Foundation to go directly to research and prevention programs. For more information about Lyme disease or to get involved, visit www.bayarealyme.org or call us at 650-530-2439.

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Media contact:
Tara DiMilia
Phone: 908-369-7168
Tara.DiMilia@tmstrat.com

One Success Hurts Thousands Who Are Suffering

Bay Area Lyme Foundation Responds to NY Times Story

We are thrilled for the Mandavilli family, who shared that their son responded well to treatment for Lyme disease in The New York Times story My Son Got Lyme Disease. He’s Totally Fine. This is not the case for everyone, and it is irresponsible, and scientifically inaccurate, to blanketly define Lyme, and other tick-borne diseases, as “easily treated”. This one patient’s experience can be countered by hundreds of other patients whose disease has brought their lives to a halt. It does a huge disservice to patients whose families read stories like this and question the patient’s symptoms, and whose community doctors see reports like this and refuse much-needed treatment. The joy of the Mandavilli family should be heralded as a success but not an example.

The CDC has reported deaths due to Lyme disease beginning as early as 2013, with most caused by Lyme carditis, a condition in which the bacteria invades the heart. And, the ability of this bacteria to invade other organs, including the brain, and cause paralysis is well-documented. Several celebrities including Alec Baldwin, Avril Lavigne, Yolanda Hadid and Kelly Osborne have by their own accounts believed that they were near death due to Lyme disease. Clearly, the singular experience of the Mandavilli family is not broadly representative of what every person with Lyme experiences.

Watch out for Tick Hitchhikers!

If your trail is overgrown and thick with tall grasses (and most are thanks to a very wet Spring this year) … then you need to be aware of TICK HITCHHIKERS…

Trails are dense with vegetation due to a wet spring.
Overhanging grass and twigs are perfect resting spots for hungry ticks waiting for their next ride.
Abundant ticks found in Marin county. Photo courtesy of Kaia Schweig.

Unlike their highway counterpart these tick free riders don’t ask, they just grab on as you, your pet (or your horse) pass by. They perch quietly on the grasses and weeds that line your trail or  backyard patiently waiting for  their next unsuspecting host (and likely meal).

All too easily, you end up taking home a few uninvited guests and if not careful about checking and removing these pests when you return home, you could also end up inviting possible infection into your home.

Ticks carry Lyme disease and many other related infections that can cause debilitating and lasting symptoms. Tick incidence is on the rise almost everywhere, in part due to climate change and wetter, milder winters. If you enjoy the outdoors, you need to be aware of these itinerant nuisances and you need to take precautions to stay safe…

Bay Area Lyme Foundation’s LymeAid, Led by Jeff Bridges, Celebrates Progress, Awards New Grants

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation’s LymeAid, Led by Jeff Bridges, Celebrates Progress, Awards New Grants

Research update and promising grant recipients energized the jubilant crowd

PORTOLA VALLEY, Calif., May 14, 2019—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the United States, brought together scientists, philanthropists, celebrities and patients at the top of the Salesforce Tower in San Francisco for the seventh annual LymeAid, an event aimed at raising funds to make Lyme disease easy to diagnose and simple to cure. The event was the largest non-profit fundraising event held on the 61st floor of the Tower, and $1M was raised, of which 100 percent will go directly to fund scientific research, education and prevention programs for Lyme disease.

“It takes a community to solve a problem as big as Lyme, and it is wonderful to see such a powerful community here tonight to support Lyme research and the work of Bay Area Lyme Foundation,” said Jeff Bridges, actor, singer, producer and composer. Bridges entertained at LymeAid, and paid tribute to his friend Kris Kristofferson who was misdiagnosed several times before receiving an accurate diagnosis of Lyme disease, and is now on the road to recovery.

Ticks Spread Farther Across US, Raising Risk of Lyme Disease Infections

Written by Julia Ries for Healthline on April 4, 2019; Reprinted with permission.

Although spring has just begun, tick season is already well underway. The slew of wet weather seen across the country has ticks crawling out and about earlier than usual. Seeing as most ticks thrive in warm, moist weather, tick season will likely be especially tough this year, health officials predict.

“While regions across the country were either unseasonably cold or warm this past winter, there’s one factor that almost all of them had in common: excessive moisture,” Jim Fredericks, PhD, the chief entomologist for the National Pest Management Association (NPMA), said in the NPMA’s bi-annual Bug Barometer press release.

“From record-setting snow in parts of Texas and Arizona to excessive rain in the southeast, continued precipitation predicted for most of the country this upcoming season will allow pest populations to continue to thrive and multiply,” he said.

New Study Provides Insight Related to Lyme Brain Fog

– Bonnie Crater, founder and vice-chair of the Board of Directors, Bay Area Lyme Foundation

“I was driving down a road that I’ve driven 1,000 times and suddenly I had no idea where I was or where I was going. So, I pull over to the side of the road to get myself oriented, and then 5-10 minutes later, I remembered and drove to my destination.”

Several friends affected by Lyme have told me of this same experience. It’s caused by the brain fog symptom of Lyme disease, which is often called “mild cognitive impairment” by physicians. I first learned about brain fog when my friend Laure and I founded the Bay Area Lyme Foundation. She explains it like this:

“My nature is to be prompt, attentive and on top of things. It’s important to me to remember people and conversations, and follow up later. Brain fog makes me feel like my brain is muffled with cotton, and it turns me into a “flake” which is very frustrating and hard for me to accept. There are times my brain has been so confused and my spatial awareness is so poor that I’ve actually walked right into a wall. Often, when I am experiencing brain fog, I have to read paragraphs numerous times, and can’t comprehend the content or remember the beginning of the paragraph by the time I’ve gotten to the end.”

As you can imagine, experiencing brain fog—and the cognitive dysfunction involving memory problems, lack of mental clarity, and poor concentration that comes along with it—is very scary for Lyme patients.

Call for Entries for the Bay Area Lyme Foundation’s 2019 Emerging Leader Award Grant

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

 

Grants are designed to inspire new research to address the challenges of Lyme disease

PORTOLA VALLEY, Calif., January 15, 2019—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, is announcing a call for entries for their 2019 Emerging Leader Awards (ELA), which are designed to encourage promising scientists who embody the future of Lyme disease research leadership in the US. This year, two $100,000 grants will be awarded in May. Recipients will be researchers from academia or the private sector who are currently at the post-doctoral through the assistant professor level or equivalent, and who have demonstrated professional and scientific leadership in the biomedical sciences. They should have a defined approach that offers scientific rationale for a research project that can advance diagnostics or treatments for Lyme disease. Proof of concept for the $100,000 awards should be feasible in 12–18 months.

These awards, along with other Bay Area Lyme Foundation efforts, aim to fill a gap as the National Institutes of Health (NIH) funding for Lyme disease research is insufficient. While there are nearly 10 times as many people diagnosed each year with Lyme than HIV in the US, Lyme disease receives approximately 1% of the public funding that is allocated for HIV/AIDS.

Bay Area Lyme Foundation Endorses First Recommendations of New HHS Working Group Focused on Tick-Borne Diseases

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

 

The Foundation encourages Congress to support the recommendations to fund efforts to increase scientific understanding of Lyme disease and other tick-borne infections

Portola Valley, Calif., November 14, 2018—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the United States, offered their appreciation to the U.S. Department of Health and Human Services (HHS) in response to The Tick-Borne Disease Working Group’s recommendation for increased Federal investment focused on Lyme disease awareness, education, diagnosis and treatment. This Federal Advisory Committee was enshrined in the 21st Century Cures Act, after years of work by Lyme disease advocates and their congressional representatives to review the Federal Government’s activities on tick-borne disease.

“This document represents an important first step by the U.S. federal government to recognize the need to better address tick-borne diseases,” said Wendy Adams, Research Grant Director, Bay Area Lyme Foundation and Member, Tick-Borne Disease Working Group.  “These recommendations make the powerful point that significant increases in federal government funding for tick-borne disease research are required before we can truly diagnose and treat tick-borne infections.”

While there are nearly 10 times as many people diagnosed each year with Lyme than HIV in the U.S., Lyme disease receives approximately 1% of the public funding that is allocated for HIV/AIDS.

Bay Area Lyme Foundation and Project Lyme Join Forces to Fight Lyme Disease at the 2018 Lyme Gala

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

 

Event Raises Awareness, and $1.4 Million for Research Related to Lyme Disease and other tick-borne illnesses, which can potentially be disabling, and even life-threatening

New York, NY, November 6, 2018 – Bay Area Lyme Foundation and Project Lyme, two organizations committed to halting the course of Lyme disease, came together to highlight the need for collaboration in the fight against Lyme during the inaugural 2018 Lyme Gala. The collaboration aims to improve awareness, education, and research of Lyme and other tick-borne infections, which can potentially be disabling, and even life-threatening. With Bay Area Lyme Foundation’s expertise working with scientists and institutions to implement valuable research, develop impactful educational programs and create novel initiatives such as the Lyme Disease Biobank, and Project Lyme’s focus on increasing awareness and improving education, these organizations hope to one day make Lyme and other tick-borne diseases easy to diagnose and simple to cure.

“Lyme disease is the most important health crisis of our time,” said 2018 Lyme Gala honoree, Bill Ford, CEO, General Atlantic. “This disease demands that we recruit and fund the best medical minds to fund a cure, and I am hopeful of the efforts of Project Lyme and Bay Area Lyme Foundation toward this goal.”

Lyme Disease Biobank Expands to Increase Understanding of Lyme Disease in Heart, Brain, Joints and Other Tissues

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

 

Lyme Disease Biobank Expands to Increase Understanding of Lyme Disease in Heart, Brain, Joints and Other Tissues

First-of-its-kind Biobank now accepts tissue donations from patients undergoing knee-replacements and similar surgeries, as well as patients who die with Lyme disease

Portola Valley, Calif., November 1, 2018 – Bay Area Lyme Foundation, a national organization funding research to make Lyme disease easy to diagnose and simple to cure, announces the addition of the Lyme Disease Tissue Collection Program to its Lyme Disease Biobank, which currently accepts blood samples. The expansion of the Biobank will allow for a greater understanding of the ability of Lyme bacteria to invade tissues and organs. The Lyme Disease Biobank is the only national entity working to accelerate research by collecting surgical and post-mortem tissue samples from individuals with persistent Lyme disease and other tick-borne infections.