Lyme Disease and Disability Benefits

Following on our story about financial resources for Lyme patients, we received this submission from Eric Minghella, an Outreach Coordinator for the Disability Benefits Help Center, offering to help clarify the process of applying for coverage.

“I came across the Bay Area Lyme Foundation this morning and I was so impressed by the work you do for people who have been affected by Lyme Disease. The resources and awareness you provide for families in need are so valuable and very much needed. I was wondering if I could contribute to the Bay Area Lyme Foundation by writing an article on applying for Social Security benefits with Lyme Disease. I work for Disability benefits help and I know that the process can be very confusing.”

As many know, treatment for and recovery from Lyme disease can be a long and costly process for those who suffer chronic symptoms. Applying for financial support can be a perplexing and tiresome endeavor,  however, there are resources to assist you and you may find answers here.

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.

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!).

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.

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

FOR IMMEDIATE RELEASE

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

Can We “Hack” Our Way to Some New Solutions for Lyme?

Reflections from a Promising Dialogue at the AAAS Conference in Washington, DC, November 17-18

by Lia Gaertner, BAL Science Committee

AAAS_Logo and magSome weeks ago, two members of the Bay Area Lyme Foundation Science Committee, Wendy Adams and Lia Gaertner, attended a leadership symposium in Washington, DC, sponsored by the American Association for the Advancement of Science (AAAS) and entitled, “Innovations-X: Rising Above the Politics for Progress in Science.”  The AAAS is the world’s largest general scientific society, with more than 125,000 individual and institutional members, and the publisher of Science magazine. Its mission is “to advance science, engineering, and innovation throughout the world for the benefit of all people.” At this event, there were three “wicked problems” discussed over two days: climate change, global/mobile health, and Lyme disease.  This blog, written by Lia Gaertner, will focus only on the Lyme portion of the conference.

Bay Area Lyme Foundation Increases Momentum for Lyme Disease Research in 2015

FOR IMMEDIATE RELEASE

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

Foundation Supports More Researchers Nationwide and Expands Advisory Board to Include Cancer Researcher and Lyme Survivor Neil Spector, MD

Silicon Valley, CABay Area Lyme Foundation, a leading nonprofit funder of innovative Lyme disease research in the US, today released its roster of 2015 research grant recipients. Collectively these researchers received $1.5 million from the Foundation for research related to Lyme disease, a growing epidemic with more than 329,000 reported new cases each year according to the CDC. The organization also highlights the exponential increase in donations to the Foundation in 2015, including more than $6 million that will go directly to support research over the next few years, and announced the addition of Duke University cancer researcher/physician and Lyme survivor Neil Spector, MD to its Scientific Advisory Board.

“With so many unanswered scientific questions related to Lyme, it is exciting to be a part of the growing focus on Lyme disease research and increased scientific creativity in approaches to identifying new diagnostics and treatments,” states Linda Giampa, Executive Director.

Bay Area Lyme Foundation To Provide Tick and Lyme Disease Education in the Solano Resource Conservation District

FOR IMMEDIATE RELEASE

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

 

Bay Area Lyme Foundation To Provide Tick and Lyme Disease Education in the Solano Resource Conservation District

Program is open to the public and part of extensive education program throughout the Bay Area

Silicon Valley, California, October 26, 2015—The Bay Area Lyme Foundation, which aims to make Lyme disease easy to diagnose and simple to cure, will provide training about ticks and Lyme disease to naturalists, outdoor educators, program managers and the general public in the Solano Resource Conservation District, as well as other local agencies, to better educate area students, parents and classroom teachers. The program is part of an educational initiative started at Bay Area Lyme Foundation to inform California residents about prevention, the proper removal of ticks, and symptoms of tick-borne diseases.  It is based on new information that Lyme disease is endemic to the area.

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.