Participating in Clinical Research: Another Treatment Alternative?

Lyme disease, particularly with chronic or late-stage symptoms, can be a horribly frustrating and debilitating illness. Symptoms can persist despite complicated treatment regimens; therapies that seem successful at first may become less effective over time; and medications that work for some appear to have no effect for others. Add to that the high cost of treatment, the complicating challenges of co-infections, and insufficient insurance coverage for both traditional and alternative treatment, and it quickly becomes apparent why clinical studies offer potential for patients who are still suffering.

For many patients, the promise of participating in a clinical trial is not just the hope for new discoveries but a more immediate opportunity to access treatment options they may not otherwise be able to secure or afford. But is clinical research the “holy grail” for these patients who are seeking another option? What are the pros and cons of clinical research? What do you need to know?

It’s All In Your Head. …Or is it? A Physician’s Perspective

It’s All In Your Head. …Or is it?
A Physician’s Perspective

Guest post: Dr. Elena Frid, MD

This week, we feature a guest post from Dr. Elena Frid, a board-certified NYC neurologist and specialist in Lyme disease and other vector-borne diseases. Dr. Frid has been recognized by her peers and patients for her innovative diagnostic methods and treatment regiments for a wide array of complex neuro-Lyme manifestations which often mimic other illnesses including multiple sclerosis (MS), Attention Deficit Hyperactivity Disorder (ADHD), various learning disabilities, Autism, Arthritis, Lupus, Alzheimer’s, Dementia, Parkinsons, anxiety/depression, intractable headaches, dizziness, insomnia, obsessive-compulsive disorder (OCD) behavior, ticks and many more. Here, she shares her perspective on the complexities of treating these complex illnesses.

Over the years, I have seen numerous patients who complain of many neurologic and psychiatric conditions. Often, when a patient complains of more than one or two problems, many physicians can get overwhelmed. It is difficult to treat a patient who seems to have a multitude of problems that, at first glance, may not appear to be related. Part of the issue is that medicine is moving in the direction of treating symptoms, and not the underlying cause of the problem.

Bay Area Lyme Foundation Highlights Growth of Scientific Lyme Community in 2016

FOR IMMEDIATE RELEASE

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

Bay Area Lyme Foundation Highlights Growth of Scientific Lyme Community in 2016

Foundation demonstrates recruitment of new scientific talent through innovative programs

SILICON VALLEY, Calif., November 28, 2016—Bay Area Lyme Foundation, a leading public nonprofit funder of Lyme disease research in the US, today announced that the organization granted $1.75 million in 2016 for Lyme research and education. Over the year, the Foundation continued to demonstrate success in bringing new scientific talent to the fight against tick-borne diseases. The organization highlights the recipients of the 2016 grant cycle, outlines the benefits of the Foundation’s contributions to Lyme Innovation, and announces their national Lyme Disease Biobank.

Tick Saliva and Borrelia Spirochetes: A Novel Approach to Lyme Diagnostics

grasperge_rev_lores-250-x-250Bay Area Lyme recognizes some of the most promising research projects and scientists in the field of Lyme Disease for its annual Emerging Leader Award. These scientists and project teams come from leading research institutions all over the country and are focused on some of the more innovative approaches to developing new diagnostics and treatments for this insidious disease. The award comes with $100,000 of project funding to help bring their research to the next stage of completion or proof-of-concept.

Here, we talked with one of this year’s winners, Britton Grasperge, DVM, PhD, DACVP, Assistant Professor at Louisiana State University in Baton Rouge, LA, as he discusses his novel approach to Lyme diagnostics and also what it’s like to connect the work that’s done in the lab to the very real stories of the human patients suffering through the disease. He was the recipient of the Alexandra Cohen Emerging Leader Award. Dr. Grasperge’s project is entitled “Identification of Tick Chemoattractant(s) for Borrelia burgdorferi.” The goal, he explains, is to design better diagnostics and to improve therapeutics for post-treatment Lyme disease patients who continue to have lingering symptoms even after having been treated. 

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

FOR IMMEDIATE RELEASE

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

FOR IMMEDIATE RELEASE

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.

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. 

Experts Hack for Lyme Disease Solutions in Boston and Berkeley

FOR IMMEDIATE RELEASE

Media Contact:
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.

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.

———————————————————————————————————-

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 Announces Grant Application for Two $100,000 Awards for Lyme Disease Research

FOR IMMEDIATE RELEASE

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

Bay Area Lyme Foundation Announces Grant Application for Two $100,000 Awards for Lyme Disease Research

‘Emerging Leader Award’ aims to attract new scientific talent to address scientific challenges of Lyme disease

Silicon Valley, California, October 5, 2015—The Bay Area Lyme Foundation, a leading national funder of Lyme disease research in the US, today announced a call for applications for two $100,000 Bay Area Lyme Foundation ‘Emerging Leader Award’ grants.  These awards will be given to two promising scientists who embody the future of leadership in Lyme disease research in the US.  The award recipients will be researchers in academia or the private sector who are currently at the post-doctoral level through the assistant Professor level, or equivalent, who have identified a defined approach to improve diagnostics or therapies for Lyme disease. Important criteria include demonstrated professional and scientific leadership in the biomedical sciences and a strong supporting scientific rationale for the project.  Research efforts funded by the award are required to generate initial proof of concept within 12–18 months.

12