Had a Good Day? Call in Sick.

By Bay Area Lyme

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

By Bay Area Lyme Foundation

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

By Bay Area Lyme

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

By Bay Area Lyme Foundation

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”.

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

By Bay Area Lyme Foundation

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

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

By Bay Area 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.

Suffering the Silence and Finding a Voice

By Bay Area Lyme

Allie CashelBy Allie Cashel

The following is a guest post by a young author and Lyme patient who has turned her experience into a catalyst to help others find their voice and break the silence around long-term struggles with Lyme disease and other chronic illnesses. You can read more about Allie in our Faces of Lyme section and on her own website, sufferingthesilence.com.

Allie has a new book due out in early September, Suffering the Silence: Chronic Lyme Disease in an Age of Denial. Bay Area Lyme Foundation will be co-hosting a reading and book signing at Books Inc. in Mountainview, CA on Tuesday, September 15th at 7:00pm.  Come join us at the event and meet this engaging young speaker!

Everyone knew about Lyme disease in the town where I grew up. “Easy to diagnose and simple to treat,” people said. “As long as you get the medicine in you, you’ll be fine.” As a kid, I was always hearing stories about someone who had recently been diagnosed with Lyme – parents, cousins, siblings, pets – and in almost every case, the stories I heard were short.

Fight Lyme Disease. Spread the Word!!

By Bay Area Lyme

Sarah Herbert_Backpack_250Recently we received this letter from a young Lyme sufferer who took the initiative and leveraged her frustration from battling Lyme disease and the hope that her recent diagnosis has now brought to create this powerful educational video about the disease and how to stay safe.

Sarah H. was diagnosed with Lyme in 2014 after battling the symptoms for more than 20 years without an accurate diagnosis. You can read more about her personal Lyme story here on our Faces of Lyme feature and see another of her prevention videos.

Act Now! 30-day Public Comment Period on Lyme Disease Treatment Guidelines

By Bay Area Lyme

IDSA logo ACR logo

 

 

The Infectious Diseases Society of America (IDSA), the American Academy of Neurology (AAN) and the American College of Rheumatology (ACR) are jointly developing a systematic review and guideline on treatment of Lyme disease.

The 30-day open Public Comment period on the Lyme Disease Guideline Project Plan started March 8 through April 9.During the Public Comment period, anyone may comment on any aspect of the Plan, including the methodology and development process utilized as well as adherence to the IOM standards. Please see here for more details.

Elet Hall, Ninja Warrior, Lyme Survivor

By Bay Area Lyme

Elet Hall is nothing short of a marvel. This amazing athlete is a four-time competitor on American Ninja Warrior, where he is known as “The Natural” for his seemingly effortless runs. The first two years he successfully made it to the Las Vegas finals despite suffering from undiagnosed Lyme disease. Shortly after the 2013 finals, he woke up one day with facial paralysis and his joints and limbs numbed with fatigue. After being diagnosed and successfully treated for Lyme disease, he again returned in 2014 to triumph in his third attempt at the competition. After dominating Stage 1 and Stage 2 of the national finals, Elet finally succumbed to the floating doors in Stage 3, coming in 2nd place in his third attempt at the competition.

This year, Elet again returned to the ANW stage, with a dominating “run of the night” at the 2015 Pittsburgh Qualifiers. (Check out Elet’s facebook page for the video!) and then headed to the Pittsburgh City Finals on August 10th. At the finals, Elet had a tough run, narrowly surviving a missed grab on the monkey bars before finally slipping on the last few doorknobs. Even with the surprising fall, however, Hall still was among the fastest finalists, qualifying him to move on to Las Vegas for the national finals and the battle for a $1 million grand prize. [Read here for more about the August finals.) Unfortunately it was not Elet’s year to walk away with the grand prize but we will be rooting for him in next year’s competition!!

Here in a November 2014 excerpt from a longer story on our Faces of Lyme feature, he shares some perspective about the challenges of fighting Lyme disease as an athlete: