Hope, Faith, and Perseverance — How One Family Overcame Lyme Disease

Eliza Hemenway_HS_312Bay Area author and noted documentary filmmaker Eliza Hemenway recently turned her journalistic eye toward her own family to document a notably personal and tryingly poignant story about her family’s trials with Lyme disease and the baffling enigma that surrounds the illness and its treatment. Her daughter, Katherine, just seven years old when infected, suffered for years before successfully being diagnosed. And even after diagnosis, the family struggled to get the care they needed.

“I am a Bay Area mother who wrote Paris in Oakland to be a story of hope and encouragement to the Lyme community, something I desperately needed when my daughter was first diagnosed and I was trying to understand the controversies and confusion surrounding Lyme. 

American Ninja Warrior Elet Hall Educates about Lyme Disease Risks

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

American Ninja Warrior Elet Hall Educates about Lyme Disease Risks

Growing issue of Lyme disease in California prompts Association for Environmental and Outdoor Education (AEOE) to provide Lyme education at statewide conference

Silicon Valley, CA, May 9, 2016 — Bay Area Lyme Foundation, a leading non-profit funder and advocate of innovative Lyme disease research in the US, today announced that Elet Hall, ambassador for the Bay Area Lyme Foundation, and Jo Ellis, director, education outreach, Bay Area Lyme Foundation helped raise awareness about Lyme disease and tick-borne illnesses among California Association for Environmental and Outdoor Education (AEOE) conference attendees.  Attendees included individuals who work in museums, zoos, nature centers, and state and national parks as well as environmental and outdoor educators who help instill an understanding of nature to individuals of all ages, from California and neighboring states.

Philanthropists and Scientists Collaborate to Increase the Pace of Lyme Disease Research, Raising $815,000 at LymeAid 2016

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

Philanthropists and Scientists Collaborate to Increase the Pace of Lyme Disease Research, Raising $815,000 at LymeAid 2016

Weekend kicks off with high-level scientific discussions, and concludes with a fun-filled performance by the legendary Diana Ross

Palo Alto, CA (May 3, 2016) – This weekend, Bay Area Lyme Foundation, a leading nonprofit funder and advocate of innovative Lyme disease research in the US, hosted a 2-day event aimed at helping make Lyme disease easy to diagnose and simple to cure.  Scientists and clinicians, who met to strategize concepts and collaborations on Saturday, were joined by more than 300 philanthropists, celebrities, patients and others in the medical field for the fourth annual LymeAid on Sunday.  The benefit dinner and concert raised more than $815,000, of which 100% will go directly to fund research for Lyme disease.  More than 329,000 Americans are diagnosed each year with this potentially debilitating disease.

Diana Ross headlined LymeAid, energizing the enthusiastic crowd with “I Will Survive” and “Ain’t No Mountain High Enough”, whose names offered unique relevance for the audience and brought attendees to their feet for an hour of nonstop dancing. Earlier in the evening two other voices also entertained guests with original songs addressing the need to overcome this devastating disease.  Kiva, 11, movingly performed his original song “10 Years and 17 Doctors” about his mother’s struggle with Lyme disease.  Additionally, Sony/ATV singer/songwriter Dana Parish, who dealt with great difficulty being diagnosed and treated for Lyme disease, performed “Pull You Through”.

Beware the Questing Tick!

May is Lyme Awareness month. And it is indeed time to be aware. Thanks to El Niño, it’s a wetter Spring than we’ve had in several years. That means we have lots of green grass, damp leaf litter, and overgrown trails and paths. It also means the ticks are out. And early spring means nymph season — these nymphs are young ticks, not much bigger than a poppy seed … the kind that are easy to miss with a quick glance.

Anna Perez This photograph depicts a deer tick, or blacklegged tick, Ixodes scapularis, as it was questing on a blade of grass.The Lyme disease bacterium, Borrelia burgdorferi, is spread through the bite of infected ticks. The blacklegged tick (or deer tick, Ixodes scapularis) spreads the disease in the northeastern, mid-Atlantic, and north-central United States, and the western blacklegged tick, Ixodes pacificus, spreads the disease on the Pacific Coast. Ticks can attach to any part of the human body but are often found in hard-to-see areas such as the groin, armpits, and scalp. In most cases, the tick must be attached for 36-48 hours or more before the Lyme disease bacterium can be transmitted.Most humans are infected through the bites of immature ticks called nymphs. Nymphs are tiny (less than 2mm) and difficult to see; they feed during the spring and summer months. Adult ticks can also transmit Lyme disease bacteria, but they are much larger and may be more likely to be discovered and removed before they have had time to transmit the bacteria. Adult Ixodes ticks are most active during the cooler months of the year.
Adult Ixodes tick questing. Photo by Anna Perez, courtesy of CDC (Centers for Disease Control and Prevention)

The good news is that ticks can’t fly, jump, or even run. But they do “quest” — they hang out on leaves, blades of grass, and branches, tiny legs poised to grab onto a warm body passing by. Ticks need to feed in order to progress to the next life stage and perching ready to grab a free ride (and meal!) on an unwitting passerby is how they ensure their survival.

When hiking or biking in the woods, if you keep to the center of the trail and avoid bushwhacking and brushing up against high grasses or other vegetation, your risk of picking up a parasitic passenger is pretty low. Once you leave the trail for a pit stop, however, the risk rises exponentially. Ticks are carried by deer and other small mammals that also like to use the trails so the highest concentration of ticks is often close to trails.

Experts Hack for Lyme Disease Solutions in Boston and Berkeley

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

Experts Hack for Lyme Disease Solutions in Boston and Berkeley

Bay Area Lyme Foundation Supports the First Hackathon for Lyme Disease to Inspire Innovation

Silicon Valley, CA, April 18, 2016— To inspire innovation to help solve the challenges of Lyme disease, Bay Area Lyme Foundation, collaborating with the Spaulding Rehabilitation Network’s Dean Center for Tick Borne Illness, Harvard Medical School Department of Physical Medicine and Rehabilitation, MIT Hacking Medicine, University of California, Berkeley, and the Veterans Affairs Center for Innovation, is supporting Lyme Innovation, the first ever Hackathon for Lyme disease, a potentially devastating condition newly infecting 329,000 people each year. Scientists, clinicians, researchers, entrepreneurs, and investors from both U.S. coasts participated in this innovative event, which kicked off this weekend, and will continue in Cambridge June 17 – 19, at the Microsoft Nerd Center.

California Strains of Lyme Bacteria May Survive Antibiotic Treatment, According to New Study

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

California Strains of Lyme Bacteria May Survive Antibiotic Treatment, According to New Study

This new study funded by Bay Area Lyme Foundation identifies 20 FDA-approved compounds that are more effective in inhibiting persistent Lyme bacteria than standard treatment

Silicon Valley, CA, April 6, 2016—A laboratory study published today, funded by the Bay Area Lyme Foundation, is the first study to demonstrate that strains of Lyme bacteria present in California ticks are able to form persister bacteria, which do not respond well to treatment.  The study is also the first to identify FDA-approved therapies that may be more effective in inhibiting these specific strains of persister bacteria in the lab than doxycycline, the most commonly prescribed treatment for Lyme disease. The study was conducted by Stanford School of Medicine researchers and published in the Open Access publication Drug Design, Development and Therapy. View full study here: http://www.dovepress.com/articles.php?article_id=26319

Primary Care Medicine and the Challenges of Diagnosing Lyme Disease

Bay-Area-Lyme-Foundation-Speaker-SeriesOn March 2nd, Bay Area Lyme again hosted another of its Speaker Series events. These popular salon-style events allow community members to come together in an intimate forum to share stories and hear directly from experts in the field.

The featured speakers this time were Dr. Christine Green, MD, a recognized leader in Lyme disease diagnosis and treatment and Allie Cashel, author of Suffering the Silence: Chronic Lyme Disease in an Age of DenialBoth shared personal and professional perspectives on the challenges of diagnosing Lyme disease. 

Lyme and Tick-Borne Disease in the US: Current State of Affairs

Dr. Ben Beard_CDCDr. Ben Beard, PhD, Chief Bacterial Diseases Branch at the CDC, visited with Bay Area Lyme and invited guests as part of the foundation’s ongoing speaker series. This donor-sponsored forum brings together researchers and other experts in an intimate forum for topical discussions with community members. Past events have included Emerging Leader Award winners, clinicians, and patient advocates.

The next event, on Wednesday, March 2, will feature Dr. Christine Green, Director of Education for ILADS, and Allie Cashel, author of Suffering the Silence: Chronic Lyme Disease in an Age of Denial.

For more information, see Speaker Series.

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As Chief of the CDC’s Bacterial Diseases Branch, Division of Vector-Borne Diseases in Fort Collins, Colorado, Dr. Beard coordinates CDC’s programs on Lyme disease, plague, and tularemia. His scientific interests include public health and the biology, ecology, and genetics of insect-borne diseases and vectors. More recently, he has been extensively involved in the CDC’s work to understand and mitigate the potential impact of climate variability and change on infectious disease ecology. He shared the CDC’s concerns about the expanding disease burden and distribution of Lyme and affirmed the importance of attracting new research interest and efforts focused on Lyme disease and other tick-borne infections.

Bay Area Lyme Foundation Offers Free Tick Testing Nationwide

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

Bay Area Lyme Foundation Offers Free Tick Testing Nationwide

Free Tick Testing Initiative Is First In The Nation and Aims to Map Tick-borne Diseases Across the U.S. Through Crowd-sourcing

Silicon Valley, CA, February 16, 2016 — Bay Area Lyme Foundation, a leading nonprofit funder of innovative Lyme disease research in the US, today announced that the Foundation is the first to offer free tick testing for residents of the U.S.  Testing is available through a partnership with Nate Nieto, PhD, Assistant Professor, Department of Biological Sciences, Northern Arizona University and his lab.  Bay Area Lyme Foundation hopes to use this crowd-sourced data as a vehicle for gaining a greater understanding of the geography of tick-borne diseases in the U.S.  If successful in accumulating data, it will be the first crowd-sourced study of its kind.