'RHONY’ HEATHER THOMSON “BITING BACK” AGAINST LYME DISEASE
May is Lyme Disease Awareness Month and we’ve launched a Bite Back Against Lyme campaign in partnership with Heather Thomson, one of Bravo TV’s “Real Housewives of New York City.”
Thomson, who has never had Lyme disease but said she has “pulled many a tick off of myself and my family,” says she “stands for the bitten, but I represent the unbitten.” An outdoor enthusiast, Thomson said she wants to help Global Lyme Alliance (GLA) “take back the outdoors.”
In an effort to raise awareness about how vulnerable individuals and families like her own are to Lyme and other tick-borne illnesses, she will do three brief grassroots videos and tweet Lyme prevention tips to her followers throughout the month.
Lyme disease has become one of the fastest growing epidemics in the nation. According to the Centers of Disease Control and Prevention, there are more than 300,000 new cases in the U.S. each year. But getting the facts about Lyme disease isn’t always easy.
Here are some of the biggest “myths” about the illness—and the information you need to protect yourself, your family and pets from tick bites so you can safely enjoy the outdoors.
Myth #1: Lyme always causes a bulls-eye rash.
Fact: Although most people associate Lyme disease with the bulls-eye-shaped “erythema migrans” (EM) rash, less than 50 percent of patients develop one. Early stage Lyme may manifest as a mild flu-like illness with a headache, a stiff neck, or a rash that’s so pale or oddly positioned that it’s barely noticeable. If you get a rash, it’s just as likely to look like a simple rash that is easily mistaken for a skin infection or spider bite.
MERGER OF LRA AND TBDA IS NOW COMPLETE – GLOBAL LYME ALLIANCE EMERGES AS LEADING VOICE FOR LYME AND TICK-BORNE DISEASE
Lyme Research Alliance (LRA) and Tick-Borne Disease Alliance (TBDA), two of the most influential voices on Lyme and tick-borne disease, have merged to become Global Lyme Alliance. The merger will result in the formation of the leading tick-borne disease organization, allowing for greater resources to be applied to research on urgently needed improvements in diagnostic and treatments, while expanding awareness programs for the general public and physicians.
Global Lyme Alliance (GLA) is currently developing a new website that will become the leading online resource for Lyme and tick borne disease patients and scientists in this arena. It will provide resources to stay informed about the progress in medical research as well as information on prevention, diagnosis, treatment and information for those living with these illnesses.
“TIME FOR LYME” GALA RAISES OVER $850,000 FOR TICK-BORNE
DISEASE RESEARCH TV personality Gretchen Carlson, "Real Housewives" cast member Heather Thomson, meteorologist Dr. Bill Evans among those at Global Lyme Alliance's gala to fund urgently needed Lyme disease research projects at top universities throughout the U.S.
The “Time for Lyme” Gala, held on Saturday, April 11 at the Hyatt Regency Greenwich, raised over $850,000 to fund research and ultimately a cure for Lyme and other debilitating tick-borne diseases.
“We are extremely grateful to our sponsors, volunteers, donors, friends and families who made this year’s Gala such a success,” said Robert Kobre, Global Lyme Alliance’s chairman. “Their dedication to advancing research and education initiatives to ultimately find a cure for Lyme and tick-borne diseases is extraordinary.
Some 500 guests attended the event, including U.S. Senator Richard Blumenthal, WABC Senior Meteorologist Dr. Bill Evans, “Real Housewives of New York City” cast member Heather Thomson, prominent business leaders and philanthropists. The event was co-chaired by Greenwich residents Amy Marisa Balducci and Riann Smith.
For the second year in a row, Fox News personality Gretchen Carlson, host of “The Real Story with Gretchen Carlson,” served as Mistress of Ceremonies. In her heartwarming opening remarks, Carlson, a Greenwich resident, talked about her experience with Lyme and said “I don’t want my kids to get this disease.”
Honored at the event was Westport resident Jane Green, the British-born author of 15 New York Times best-selling novels, who received GLA’s Star Light Award for lending her voice to the fight against Lyme disease. Like many Lyme patients, Green struggled for more than two years before she was properly diagnosed.
Researchers from the Johns Hopkins Bloomberg School of Public Health, supported by a grant from Lyme Research Alliance have developed a test they say will allow them to evaluate the effectiveness of thousands of FDA-approved drugs against the bacteria that causes Lyme disease.
Study leader Ying Zhang, MD, PhD, a professor in the Bloomberg School’s Department of Molecular Microbiology and Immunology, and his colleagues tweaked a test typically used for simply counting DNA in samples in the lab. Using the test, they were able to quantify how many Borrelia burgdorferi are alive and how many are dead after each drug was added to the bacteria.
“It’s superior to the current gold standard for testing Borrelia viability,” Zhang says. “This could become be the new gold standard.”
The news is particularly poignant to the Lyme Research Alliance community which honored Dr. Zhang at LRA’s April 2014 Time for Lyme Gala with the Lauren Brooks Hope Award, for his ongoing work investigating the lingering Borrelia burgdorferi bacteria, known as persisters. The most exciting part of the development of the test, Zhang says, is that his team has already used it to identify a series of antibiotics approved to treat other infections that show promise in the lab
Zhang cautions that animal studies should be done before they are tested in Lyme disease patients, even though these are clinically used drugs for treating other infections, as inappropriate use of antibiotics can have side effects.
To read more:
Article in Infectious Disease Special Edition, click here
The full press release from Johns Hopkins, click here
The research paper in PLOS ONE, click here
NEW GRANT AWARDS LRA’S LARGEST EVER!
LRA has announced the award of new grants totaling $648,000 to advance cutting-edge research by some of the nation’s top university researchers pursuing innovative strategies to develop a reliable diagnosis and effective treatment options for Lyme disease.
LRA awards grants where the most promising cutting-edge science is being deployed and this most recent round will support work at Columbia, Johns Hopkins, Northeastern, Rutgers, UCSF, UC Davis, and the University of Pennsylvania.
LRA’s Chief Scientific Officer Dr. Harriet Kotsoris noted that LRA had received the most applications in its history—over 20 grant proposals—a 100 percent increase from last year. Grant decisions are made by LRA’s Grant Review Committee whose process for reviewing and awarding grants mirrors that of the NIH (National Institutes of Health). For more on the Grants Review Committee go to: http://www.lymeresearchalliance.org/research_new_grant_application.html
“While we were pleased to receive so many solid applications from talented scientists this year, it underscores the fact that only 17 percent of grant applications receive funding from the government these days,” said Harriet Kotsoris, M.D., LRA’s Chief Scientific Officer. “Scientific research is severely underfunded by the government and scientists must go to private donors.”
HR 4701 LYME BILL PASSED BY HOUSE OF REPRESENTATIVES
On Sept. 9, history was made when the first-ever standalone bill addressing Lyme disease—the Tick-borne Disease Research Transparency and Accountability Act of 2014 -- passed the House of Representatives. This important legislation now goes to the Senate.
It is not yet known whether a Senate vote will take place in this session of Congress.
The bill which received bipartisan support in the House, would if signed into law, set up a working group with patients and physicians at the table, and contains language requiring the Secretary of Health and Human Services to submit a strategic plan to Congress including a plan for improving outcomes of Lyme disease and other tick-borne diseases.
The House passage of this bill is due in part to the ongoing efforts of the bill’s sponsor Rep. Chris Gibson (R-NY) and Chris Smith (R-NJ).
LYME RESEARCH ALLIANCE'S ADVICE TO GOLFERS:
STAY TICK SAFE!
Many golfers shrug off Lyme disease thinking it’s a threat they don’t have to worry about. But even the most urban-set golf course can be home to ticks that that carry the Borrelia burgorferi spirochete which causes Lyme disease. Here are some practical steps that golfers can take to combat ticks and Lyme disease.
It is with great excitement that we share our intention to merge Lyme Research Alliance with The Tick-Borne Disease Alliance. The Lyme community must combine forces to bring about the massive increase in research investment through private and government sources, that will be needed to make Lyme and other tick-borne diseases (TBD’s) both preventable and curable. Therefore, Lyme Research Alliance and Tick Borne Disease Alliance are taking a bold step in order to more efficiently respond to this growing problem. On May 28th, the Board of Directors of both organizations voted to legally merge together. While we await approval from the respective state regulators, we will work together toward the goal of merging to become one organization with one mission under a new name that will reflect the important work of these two prominent groups.
In making this move both organizations are responding to what our donors have been saying for years: “Why are there so many different Lyme organizations?” and “Which one should we support?” By bringing together two of the largest players in the field, we expect to speak with a single, more powerful voice, and to channel a larger proportion of our donors’ dollars into finding a reliable test and a cure.
Thank you for your very valuable support throughout the years, which we hope you’ll continue in the future as we strive to educate the public about TBDs, find a reliable diagnostic test, and discover effective treatments for all stages of Lyme and tick-borne diseases.
If you have any questions, please don’t hesitate to reach out to us.
RECOMMENDED ARTICLE FROM CONGRESSIONAL QUARTERLY
Comprehensive article in the November 2013 issue of CQ Researcher Quarterly, provides an excellent overview of the current Lyme landscape including co-infections, discussion of the mouse and primate studies and a balanced articulation of the arguments on both sides of the Lyme controversy.
DONATE APPRECIATED STOCK THIS YEAR FOR A DOUBLE TAX PLAY
With the stock market in record high territory this year, NOW is a particularly beneficial time to consider a gift of appreciated stock to the non-profit organizations you support – which of course we hope will include Lyme Research Alliance. If you are planning to make a donation to Lyme Research Alliance, you might want to look through your stock portfolio before you write a check. Giving appreciated stock instead of cash can greatly benefit both parties. If the stock has increased in value from the time of purchase, the owner can avoid paying the capital gains tax by donating the security to charity. When the security is being donated to a charitable organization and has been held more than a year, the total amount will still be eligible for a tax deduction. Since taxation is avoided on the stock donation, the giver will be able to make a larger donation.
Some good news for the Lyme community is that Lyme disease is receiving an unprecedented level of coverage in the media, with a particular focus on chronic cases where diagnosis and treatment failed the patient. Here are some of the current stories:
December, 2013: New Recognition of Lyme Deaths: It wasn't long ago that the deer tick was seen as dangerous - but not a killer. That view is changing. Public health officials report that at least 10 people in Massachusetts died last year after contracting tick-borne diseases. One was a young adult who, as reported in December by the Centers for Disease Control and Prevention, collapsed in November 2012 after suffering a rare cardiac event known as Lyme carditis. Read more.
October 1, The Huffington Post: Lyme Around The World Series: Each week in the Huffington Post, blogger Cathy Rubin examines the current state of Lyme and other tick-borne diseases around the globe. She has interviewed leading researchers and government officials in the U.S., Japan, Australia, France, Germany, Norway and other countries. Read more.
August 18, Boston Globe: When the Cure Doesn't End Pain: Third article in a series by staff writer Beth Daley: some Lyme disease patients have symptoms that can linger for years despite standard treatment. Scientists are puzzling over how that can be. Read more.
July 12, NY Times: Tick Checks, Bug Spray and Antibiotics: Summer in the Age of Lyme, by Hope Reeves. The worst summer for Lyme on Block Island. Read more.
July 12, CNN: Why You Should be Afraid of Lyme Disease: A compelling documentation of chronic Lyme and the serious problems that still surround its diagnois and treatment from an authoritative source, Pamela Weintraub, author of "Cure Unknown: Inside the Lyme Epidemic", winner of the 2009 American Medical Writers Association book award. Pamela is also executive editor of Discover magazine. Read more.
July 8, NY Times: “When Lyme Disease Lasts and Lasts”, from personal health columnist Jane Brody showcasing several case stories that will sound familiar to those families living with Lyme. We enjoyed the quote from LRA-funded researcher John Aucott referring to long-term Lyme sufferers who are labelled by some as hypochondriacs or sluggards: “These are high-functioning people — couch potatoes don’t get Lyme disease.” Read more.
Lyme Research Alliance, Inc.
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Tel: (203) 969 1333
The material on this web site is provided for information purposes only. This material (a) is not nor should it be considered, or used as a substitute for, medical advice, diagnosis, or treatment; nor (b) does it necessarily represent endorsement by or an official position of Lyme Research Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.