Going Outside to Play with Abandon…

Processed with VSCO with a6 presetSharane Dorrah is on a mission …  A passionate hiker, mountain biker, skier, and general outdoors enthusiast who suffered years of debilitating illness due to the unfortunate bite of a Lyme-infected tick, Sharane is determined to ensure that the rest of the world avoid her nightmare through greater awareness and protection.

The company she launched this past year, Peskys, offers fashionable performance activewear instilled with an EPA-approved insect repellent to ward off a wide range of “pesky” bugs that can carry serious diseases.  Sharane explains, “Sounds dramatic, I know… [but] I’m on a mission to save lives by giving a fashionable option for protection against bites from those pesky bugs that can carry not only Lyme, but also Zika, West Nile, and all those other ‘bug diseases.’ I’m opening my big mouth and creating awareness. And I’m donating protective clothing and other items to children because they are the most at risk for some of these diseases.”

Sharane’s tactics are intriguing. Certainly the spread and the number of serious diseases like Lyme, Zika, and West Nile have forced the issue into the minds of more people; and yet, apprehension or lack of enthusiasm about the preventive tools available — such as chemical sprays, seemingly excessive coverup or avoidance tactics, etc. — mean that far too many of us who love the outdoors remain at risk. Enter this new concept: “performance apparel reinvented into sophisticated style options that meet the demands of day-to-day urban and outdoor active living. Pesky’s insect repellent apparel options perform equally well on the hiking trail as they do pool-side, at the farmer’s market, or in the backyard. They’ll ward off the worst of the season’s mosquitoes and ticks, but they do it without sacrificing style.”

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.

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

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.

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

FOR IMMEDIATE RELEASE

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

FOR IMMEDIATE RELEASE

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”.