August 2013, IN THIS ISSUE                                                    Like us on Facebook Follow us on Twitter Find us on Pinterest
Executive Director's Letter
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Person of the Month
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Congrats to Diane & Debbie!
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Moffly Media A-List
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Mercedes Lyme Info Event
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Stanwich Golf, Oct. 10
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Schumer Urges CDC Study
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Work Progresses on Lyme Vaccine
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MedicationWise
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Lyme Talks

Information and

Support Gatherings

In Greenwich, CT

 

"Laboratory Testing for Lyme and other Tick-Borne Diseases" will be the topic of the next meeting of "Lyme Talks" on Thursday, September 5. Bob Giguere, director of sales for IGeneX Laboratories of Palo Alto, CA, will present information on the various reasons why testing procedures can be problematic as well as new information that can help medical professionals better evaluate test results regardless of the testing labs.
 

Volunteers Needed--Lyme

Research Alliance Gala

Want to improve the lives of people affected by Lyme disease? Volunteer with the Lyme
Research Alliance! We're looking for volunteers to help with our annual Gala which will be held Saturday, April 5, 2014 at the Hyatt Regency in Greenwich, CT.  We need your help to make the Gala a success. If you're interested in volunteering, please contact


Bring LRA to Your Workplace!

 

LRA recently gave a

"Lunch 'N Learn"

presentation "What You Need to Know About Lyme Disease" to Estee Lauder staffers in the beauty company's New York offices. Add your company or PTA group to the list of organizations benefiting from our new "Lunch 'N

Learn" or evening seminar program.

Contact  Peter to schedule a free seminar or to get

more information.



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Executive Director's Letter

Last week we were encouraged when the Centers for Disease Control and Prevention (CDC) went on record with their estimate of 300,000 new cases of Lyme each year. The agency confirmed what we've known for years-that Lyme disease is a "tremendous public health problem in the U.S."

 

By using a different methodology from their current basis of reported cases, the CDC arrived at a much more realistic count based on insurance company data and surveys of clinical labs and self-reporting by the general public. The new number of 300,000 is a far cry from the CDC's previous "official" number of nearly 30,000 confirmed cases, and with more accurate estimating we expect this number to increase in the future. In addition, the estimate doesn't take into account those infected with other devastating tick-borne illnesses such as Borrelia miyamotoi, babesiosis and the Powassan virus.      

 

We still have a long way to go before our families can enjoy the outdoors in the carefree ways of yesteryear. But with the announcement, it's clear that Lyme disease has captured the general public's attention. Hundreds of news outlets across the nation carried the CDC news and area media, including Cablevision News 12 and Connecticut Magazine, turned to LRA for comment.

 

Of course, the new statistics are particularly important for positioning Lyme on the political agenda, and for setting levels of government investment in the long-term on tick-borne disease research. To put this into perspective the National Institutes of Health (NIH) currently spends $3 billion on HIV/AIDS research with 50,000 new cases annually in the US, down from the peak of 130,000 in the mid-1980s, while Lyme disease only receives $25 million from the NIH.

 

Unfortunately, the mandated sequester cutbacks for government spending have reduced grant making by the NIH and CDC, making it even harder for innovative projects to find funding. The role of privately-funded research is greater than ever and LRA continues to fund the most urgent and promising research in its quest to defeat Lyme and other tick-borne diseases.

 

We are delighted that LRA new grantees for the 2013/2014 grant cycle have begun work on an extremely promising body of new research that we anticipate will contribute significant advances toward both diagnosing and treating Lyme disease. And LRA grantee from the 2012/2013 grant cycle Dr. Ben Luft is in the news with positive progress in European clinical trials of a new vaccination in addition to the encouraging progress that Dr. Luft has made with support from LRA, toward a reliable diagnostic test.

 

We hope you'll help us advance the boundaries of knowledge by supporting our work with a tax-deductible contribution. We also participate in corporate matching programs. Many employers will "match" the gifts that employees make to nonprofits such as LRA. Some are one-to-one matches, while others will match on a double or triple basis. So, a gift of $100 could become $200 or $300! To find out if your company has a matching gift program, click here.  

With your help, we will continue the momentum toward winning the war against long-term Lyme and other tick-borne diseases.  

 

 

 

 

   

 

 

 

Peter Wild

 

 

  

Miss America Contestant Rebecca Jackson Named "Person of the Month"

When Rebecca Jackson walks out on the stage of the Miss America pageant on September 15, it will represent far more than her triumph over other contestants in her state (Delaware)-it will mark how far she has come in her fight to overcome Lyme disease. The 21-year-old beauty queen, named our latest Person of the Month, dealt with a severe bout of Lyme seven years ago that left her "a shell of myself"-unable to walk or read and in devastating pain for months. "Without a doubt, going through Lyme disease was the worst experience of my life," she says. You can read about her Lyme experience and why she tells those suffering from the disease to "never give up hope." 
Coming Up Next in Sept. and Oct.
 

Congrats to Diane and Debbie!
 

 

We're delighted to announce that Diane Blanchard and Debbie Siciliano, LRA's co-presidents, have been singled out for the Greenwich YWCA Spirit of Greenwich Awards. In its 20th year, the Spirit of Greenwich Awards will be given to Debbie, Diane and eight other outstanding women for their "extraordinary initiative and dedication" to making Greenwich a special place to live. Tickets for this September 19 event, which begins at 5 p.m. in a private Greenwich home, are available starting at $300 each at www.ywcagreenwich.org.  

 

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Thank You Moffly Media

A week before Diane and Debbie receive their YWCA awards, LRA will be in the spotlight as the designated nonprofit recipient of the 4th annual Moffly Media A-List Awards celebrating Fairfield County's premier home and design, landscape and architectural businesses. We're thrilled that a portion of the funds will go to LRA as the designated beneficiary. The awards gala will be held Thursday, September 12 from 6-9 p.m. at The Palace Theater in Stamford. Tickets are available at $65 each at  
www.a-list.tix.com.
   

Invite Your Friends! 

What You Need to Know About Lyme Disease: 2nd Annual champagne reception with a briefing by a front-line practitioner and a leading Lyme disease researcher.  

With the number of Lyme disease cases increasing in the Northeast, don't miss the second annual LRA Lyme Informational Evening and cocktail reception to be held at Mercedes-Benz of White Plains on Wednesday evening, September 25. The event will brief attendees on the tools they need to fight back against the silent epidemic of tick-borne disease and to hear from LRA grantee Dr. Kim Lewis what innovations we can expect to see coming out of the research lab in the near future. This is the perfect occasion to introduce a friend to LRA and bring them inside the tent to learn not only the ABC's of Lyme disease, but also to hear first hand from a leading researcher in an informal environment that will provide opportunities for one-on-one discussion.

 

Confirmed speakers include:

Kenneth Liegner, M.D., a Pawling, NY internist who has been actively involved in the diagnosis and treatment of Lyme and related disorders for 25 years. Dr. Liegner will discuss Lyme from a clinician's perspective and will also talk about the added challenges now being posed by co-infections and new tick-borne diseases like the Powassan virus.

 

Dr. Kim Lewis of Northeastern University who leads a LRA-funded team researching the dynamics of "persister" Lyme bacteria that evade and survive antibiotic onslaught. Dr. Lewis will discuss the future of Lyme medicine and what new treatments Lyme sufferers can expect to see coming out of the research lab in the near future.

 

Sponsors for this year's event at the time of publication include Tito's Vodka, Westchester Magazine and Cumulus Westchester AM and FM stations.This event was particularly well received last year. Our hosts at Mercedes-Benz of White Plains and the Pepe Auto Group, presented an evening with great style, great food and a stunning collection of vintage Mercedes to set an upbeat tone for the evening. We are grateful to Gary Turco and his team at the Pepe Auto Group for their support of our cause!

 

The suggested donation for attendees is $25.  For details, e-mail info@lymeresearchalliance.org.

 

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2nd Annual Golf Tournament, October 10, The Stanwich Club, Greenwich

 

   

The Stanwich Club is one of the nation's best reviewed courses and is the top ranked course in Connecticut. An invitation to play at Stanwich tends to find its way to the top of most golfers' must-do lists. This year's LRA Golf Tournament at the Club will follow the format of last year's well-reviewed event, with no more than 20 fours on the course for a mid-day shotgun start. The Club provides a full program of lunch before the game followed by cocktails, hors d'oeuvres and buffet dinner, making for a truly spectacular outing. In addition, there will be a silent auction with an exciting assortment of prizes.

 

This is a great opportunity to support LRA and invite your golfing friends or clients out for a very special day.  

 

Details at  lymeresearchalliance.org/golf.htm.

In the News  

Schumer Urges CDC to Study Tick-Borne
Powassan Virus

 

U.S. Senator Charles Schumer (D-N.Y.) is urging the Centers for Disease Control to allocate resources toward the study, prevention and treatment of a new tick-borne threat known as the Powassan virus. The deadly illness has been found in New York's Hudson Valley area. "Powassan virus is a rare but dangerous disease now present in New York and we haven't done nearly enough at the federal level to tackle it," Schumer said.

   

Powassan, which can cause encephalitis, an irritation or swelling of the brain, kills 30 percent of those affected. Schumer also announced his support for federal legislation to direct more resources and attention to fighting Lyme disease, Babesiosis and other tick-borne illnesses.   

 

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Work Progresses on a Lyme Vaccine

 

A vaccine for Lyme disease has shown promise in clinical trials, producing substantial antibodies against the bacteria that causes the disease. Researchers studied 300 people in Austria and Germany who were given three primary immunizations and one booster immunization in a range of doses. Study co-author Dr. Benjamin Luft of Stony Brook University School of Medicine, a Lyme Research Alliance grantee, reported that in all administered doses of the vaccine, the patients showed an immune response to all species of Borrelia. "We hope that a larger-scale, Phase 3 trial will demonstrate not only a strong immune response but true efficacy in a large population that illustrates protection against Lyme disease," he said.

 

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MedicationWisevaccine 

 

The Food and Drug Administration announced recently that fluoroquinolone antibiotics, which are sometimes prescribed for Lyme patients, carry the risk of nerve damage.  The agency urged doctors to switch patients to a nonfluoroquinolone alternative if symptoms of peripheral neuropathy develop (pain, burning, tingling, numbness or tingling in the arms or legs) unless the benefit of continued treatment outweighs the risk.

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