February 2014, IN THIS ISSUE                                                    Like us on Facebook Follow us on Twitter Find us on Pinterest
Executive Director's Letter
Listen Up 
3rd Annual "Race Against Lyme"
Can Lyme Be Sexually Transmitted? 
We're Proud of Angeli!

Test Results Straight From the Lab

Gipson Seeks $1 Million for Research    

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Lyme Talks

The MTHFR Gene 

Join us for our next "Lyme Talks" meeting. Dr Kendra Becker, naturopath/nurse practitioner, will discuss the MTHFR gene and the high correlation between individuals who are positive for MTHFR and those presenting extensive Lyme symptoms.
Location: Town Hall, Greenwich, CT
MARCH 20, 6:30 PM

Dr. Steven E. Phillips, a Yale-trained physician specializing in the diagnosis and treatment of Lyme disease, will speak about the difficulties diagnosing and treating chronic Lyme. Location: Town Hall, Greenwich, CT
MAY 3 and 4

 Lyme & Other Tick-Borne
Diseases Conference

The 15th annual conference jointly sponsored by the Columbia University College of Physicians and Surgeons and the Lyme Disease Association will be held in Providence, RI. Details to come.

LRA counts on your support for our research mission. Click here to make a tax-deductible donation. Please give as generously as you can. 


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@LymeResearch on Twitter?  Check out the conversation   and join us:

Your Tweet got retweeted NYS Sen. @TerryGipsonNY  
asks Health Dept. to  
increase funding for #tick- borne disease research. 
@marybethpf: #CDC  
told: improve tests,  
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of #Lyme Disease... @LymeResearch

@LymeResearch: You  
have a new  follower on Twitter. 
Senator, Arkansas

 Lyme Research  
Alliance Announces  
Star-Studded Lineup  
of Honorary Chairs for  
"Time for Lyme" Gala" 


If you didn't have a chance to listen to author Amy Tan's interesting radio interview about Lyme disease, you can still hear it here.

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Your Workplace!
Recently, LRA presented our talk "What You Need to Know About Lyme Disease" at IBM's Watson Research Center. More than 150 employees attended in person multiple IBM locations. Add your company or PTA group to the list of organizations 
benefitting from our "Lunch 'N Learn" daytime or evening seminar program. Contact Peter to schedule a free seminar or to get more information. 
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Executive Director's Letter

We hope you are staying safe, warm and dry in this challenging winter season. And we also hope that you are marking your calendars for our "Time for Lyme" Gala, April 5, at the Hyatt Regency Greenwich, Old Greenwich, CT.


Some of the biggest names in entertainment and sports have signed on to support this year's Gala, our major fundraising event. Those who will serve as Honorary Event Chairs include four-time Academy Award-nominee Jane Alexander; designer Tommy Hilfiger and his wife, Dee; Golden Globe-nominee Peter Sarsgaard; baseball Hall-of-Famer Tom Seaver; "Real Housewives of Beverly Hills" star Yolanda Foster; Bravo TV's Andy Cohen; Olympian Donna deVarona, and actress Joanna Kerns. Television personality and former Miss America, Gretchen Carlson, a Greenwich resident, will serve as Mistress of Ceremonies.


Of course, the importance of furthering research to ultimately find a cure for Lyme and other tick-borne diseases is LRA's primary focus and will be emphasized at the Gala as we honor LRA-supported researchers Ying Zhang, M.D., Ph.D, a professor of molecular microbiology and immunology at the Johns Hopkins Bloomberg School of Public Health, and Kim Lewis, Ph.D., distinguished professor and director of the Antimicrobial Discovery Center at Northeastern University. Each scientist will receive the Lauren F. Brooks Hope Award, honoring those who are making strides in research and treatment in the pursuit of a Lyme disease cure.


To add to the excitement, we will be honoring Elena Delle Donne, the reigning Women's National Basketball Association's (WNBA) Rookie of the Year, with our StarLight Award, honoring an individual who has, despite their ongoing battle with Lyme disease, courageously stepped forward to tell their personal story to heighten awareness about the disease and the critical need for research.


By the way, last year's StarLight honoree, Yolanda Foster, one of the "Real Housewives of Beverly Hills," has continued to raise awareness about Lyme disease. Most recently, she talked about her struggle with the illness and what she's doing to stay healthy on "Good Morning America." We've posted the video on the LRA website homepage.


The Gala will be held Saturday, April 5, from 6:30 p.m. to midnight. The evening features a cocktail reception, dinner, dancing, live auction and special celebrity guest appearances. For more information or to purchase tickets, visit LymeResearchAlliance.org or call 203-969-1333.


We look forward to seeing you at the Gala. Not only is it a wonderful event, but through your support you'll be helping to make a difference in furthering critically-needed research initiatives.









Peter Wild




Listen Up

Audio recordings of presentations given last year by several of our
"Lyme Talks" visiting speakers are now available. You can listen to Henri Roca, M.D., former medical director of Greenwich Hospital, talk about "The Complexity of Chronic Lyme Disease: Dynamic Interactions Between Disease and Treatment," Bob Giguere, director of sales, IGeneX Laboratories discuss "Laboratory Testing for Lyme and other Tick-Borne Diseases," Colleen Smith, certified massage therapist on "Massage Therapy for Relief of Lyme Disease Symptoms," and others. All are free and available by clicking here.
Mark Your Calendar  


3rd Annual "Race Against Lyme"


A team of University of Rhode Island runners participated in
last year's Race and even brought along this "Big Tick."


Back by popular request, our third annual "Race Against Lyme" will once again be held at Cove Island Park in Stamford on Sunday, April 27. The 5K Walk/Run is timed to help kick off Connecticut's Lyme Disease Awareness Month.


Nearly 300 runners, walkers and friends participated in last year's event. We were especially grateful that teams from several surrounding states were organized to raise funds for Lyme disease research on behalf of LRA. The top fundraising award went to a team organized by the sister of 20-year old woman suffering from Lyme since she was 10. Her team, along with another, raised over $10,000 combined.


We were also delighted that a team of runners from the University of Rhode Island participated in the event and even brought their very own giant tick which scored high marks for originality, but lower marks for speed.


We hope you will help us raise funds for Lyme research by forming a fund-raising team and participating in the event. For information to to www.LymeResearchAlliance.org/race.htm 

In the News  

Can Lyme Be Sexually Transmitted?   


A controversial study published in the Journal of Investigative Medicine suggests that Lyme disease may be sexually transmitted.


For the study, an international team of researchers divided participants into three groups: control subjects without any evidence of Lyme disease, a random group of men and women who tested positive for Lyme, and married, heterosexual couples engaged in unprotected sex and tested positive for the illness.


What they found was all the control subjects tested negative for Lyme in vaginal secretions or semen. However, all the women with Lyme disease had the bacteria present in vaginal secretions, while about half of the men with Lyme showed the spirochetes in the semen samples. In addition, one of the heterosexual couples with Lyme showed identical strains of the Lyme bacteria in their genital secretions.


"Our findings will change the way Lyme disease is viewed by doctors and patients," said Marianne Middelveen, a Canadian microbiologist and lead author of the study. "It explains why the disease is more common than one would think if only ticks were involved in transmission."


However, the CDC is unconvinced and said: "There is no credible scientific evidence that Lyme disease can be spread from person-to-person through sexual contact."





We're Proud of Angeli!   


The Lyme community around the world cheered on skier Angeli VanLaanen who overcame Lyme disease and a three year hiatus from her sport to compete in the Olympic finals in halfpipe skiing. If you haven't watched Angeli's 30-minute video in which she shares the story about her struggle with Lyme (flagged in our June newsletter) you can do so now. Watch "LymeLight-The Story of Professional Freeskier Angeli VanLaanen Living With Lyme Disease" at http://vimeo.com/65479794.

Professional freeskier Angeli VanLaanen soars in a half-pipe event.

Test Results Straight From the Lab


Patients can now get their test results directly from the lab that produced them, without having to go through a doctor's office, the U.S. Department of Health and Human Services announced early this month. Under the new rule, patients or their "personal representatives" can see or be given a copy of the patient's protected health information, including an electronic copy. "Information like lab results can empower patients to track their health progress, make decisions with their health care professionals and adhere to important treatment plans," HHS Secretary Kathleen Sebelius said in a news release.  




Gipson Seeks $1 Million for Research


New York State Senator Terry Gipson is urging the state's Health Department to increase funding of research on tick-borne illnesses. The Rhinebeck Democrat proposed spending $1 million on research. "Funding for a state Lyme disease education and research institute has declined by more than 50 percent since 2008- from $150,000 to $69,500," the Poughkeepsie Journal reported.


Gipson's call for additional funds came shortly after the announcement that the 2014 federal budget will include $9 million in Lyme spending-about 3 percent more than last year-for the U.S. Centers for Disease Control and Prevention to investigate and battle Lyme. The budget agreement also "encourages" the CDC to look into the "possible long-term complications" of Lyme disease and work toward developing "sensitive and more accurate" tests for it.


A similar directive about testing was included in the 2012 budget, but the more recent language appears to soften rather than strengthen demands on the CDC. In the 2012 budget, the CDC was "encouraged" to expand testing, but in the 2014 version the agency is encouraged "to consider" doing so.

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