Where to Go for Help

Lyme disease, if treated early, can usually be successfully eradicated with antibiotics. Unfortunately, as many patients know, if it is not diagnosed early, it can cause debilitating sickness and a myriad of symptoms that are much harder to treat. And not all treatments are covered by insurance, making the whole experience potentially very financially as well as physically draining.

One of the questions we often get is about financial support. Bay Area Lyme Foundation is a research organization, hoping to accelerate the discovery of new, more effective — and less costly! — treatments and diagnostics, but unfortunately is not able to provide support for individual cases. However, there are other places to go for help. There are many organizations doing great work to help support those suffering from Lyme, in fact, a growing number as awareness spreads about this pernicious disease. What follows is a partial list, if you know of others, please do share.

CRISPR Technology: A New Approach to Eradicating Borrelia

courtesy Beisel Lab, NCSUDr. Chase Beisel is an Assistant Professor at North Carolina State University who was recognized earlier this year with one of Bay Area Lyme Foundation’s prestigious Emerging Leader Awards. This honor is in recognition of and support for his lab‘s novel work exploring CRISPR technology as a potential treatment for Lyme infections.

Dr. Beisel’s work integrates molecular biology, chemical engineering, and mathematical modeling and has been acknowledged with several National Science Foundation (NSF),  National Institute for Health (NIH) and other important awards. His foray into the field of Lyme is a new direction for his lab and ties directly to the Foundation’s aim of attracting some of the brightest and best minds in the country to apply innovative new approaches and methodology to accelerate the development of new diagnostics and treatments for Lyme disease. We are excited about his work and asked him to elaborate further in this recent conversation.

New Pathogen Discovered By Researchers Who Discovered Lyme – But Was Not Reported

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

New Pathogen Discovered By Researchers Who Discovered Lyme – But Was Not Reported

Bay Area Lyme Foundation Responds to News Related to Initial Studies of Lyme Disease

Portola Valley, CA, October 12, 2016 – Bay Area Lyme Foundation, an organization dedicated to making Lyme disease easy to diagnose and simple to cure, is deeply disturbed by the news that researchers involved in the initial discoveries of Lyme disease omitted critical information related to additional bacteria that may have contributed to illness in early cases. This information was revealed in a story today in STAT News titled “The ‘Swiss Agent’: Long forgotten research unearths new mystery about Lyme disease.”

This new development clearly points to a critical need to reexamine much of the current orthodoxy in Lyme disease.

Bay Area Lyme Foundation Announces Winners of “Lyme Innovation” Hackathon at White House Event

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

Bay Area Lyme Foundation Announces Winners of “Lyme Innovation” Hackathon at White House Event

White House Acknowledges Contributions of Program Organizers
Toward Solving Challenges of Lyme Disease

(Cambridge, MA,) October 5, 2016 — As part of the White House Open Data Innovation Summit, 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, announces the winning teams of Lyme Innovation.  Lyme Innovation is the first ever Hackathon for Lyme disease, which provided a forum for more than 100 scientists, clinicians, researchers, entrepreneurs, and investors from a variety of disciplines to brainstorm solutions for this potentially devastating disease.

Had a Good Day? Call in Sick.

jordan-fisher-smith_312Wednesday evening September 14th, Jordan Fisher Smith, Lyme patient, former National Park Service (NPS) ranger and US Forest Service firefighter, narrator of the Lyme documentary Under Our Skin, freelance writer, and author of bestselling books, Nature Noir: A Park Ranger’s Patrol in the Sierra and Engineering Eden: The True Story of a Violent Death, a Trial, and the Fight Over Controlling Nature, was the latest to grace the Bay Area Lyme stage as part of the Distinguished Speaker Series. This free public series features noted scientists, health professionals, and Lyme advocates in intimate salon-style settings, where audience members can ask questions and get answers about the latest in Lyme disease research, treatments, and policy news. And sometimes, it’s just about sharing stories and insights.

This week’s presentation was just that — a moving discussion of Jordan’s personal experience and reflections battling Lyme disease, what he describes as the toughest 9 1/2 years and biggest struggle of his life (and this from a man who nearly lost his life during blizzard conditions on the top of Mt. Shasta!).

Bay Area Lyme Foundation Sponsors Massachusetts General Hospital Forum to Address Challenges of Lyme Disease

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

Bay Area Lyme Foundation Sponsors Massachusetts General Hospital Forum to Address Challenges of Lyme Disease

Researchers consider issues of persistence, and cardiac and neurological manifestations of Lyme disease, as well as the challenges of other emerging tick-borne diseases

Boston, MA, June 13, 2016 – Massachusetts General Hospital convened a national scientific conference, “Lyme Disease and Tick-Borne Illnesses: Diagnostics, Emerging Pathogens and Avenues for New Research,” was convened at Massachusetts General Hospital to educate and inspire collaboration toward a greater understanding of the of tick-borne diseases and how research should be focused. This conference, which was attended by academia, industry, and government, was supported by Bay Area Lyme Foundation. Lyme disease infects more than 329,000 people each year in the U.S., and there is currently no sufficiently reliable Lyme diagnostic test and there is no universally effective treatment for post-treatment Lyme disease.

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. 

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

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Media Contact:
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”.

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

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Media Contact:
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

Breaking the Silence: Finding a Voice to Change the Face of Lyme

“We just have to speak up so that people can get better.” It’s a pretty straight forward line in the transcript of one of the stories in Allie Cashel’s new book Suffering the Silence: Chronic Lyme Disease in an Age of Denial (2015), but it’s also a call to action — a call inviting others to find their voices and share their stories to create the public momentum for change. Lyme disease is an epidemic that should be of concern to the general public and yet has too little awareness and far too few answers.