Hundreds Hike & Ride on the Hook for Lyme Disease Research & Awareness

Press Contacts Kim Cronin LDA Walk Chairman kimcronin@msn.com 
Pat Smith LDA President Lymeliter@aol.com 888 366 6611

Press Release                   For Immediate Release

Hundreds Hike & Ride on the Hook for Lyme Disease Research & Awareness
Weather Cooperates for 1st NJ Lyme Awareness Walk/Ride by national Lyme Disease Association 

Monmouth County, May 12, 2008–Over 230 people came to raise funds for a disease that is newly infecting tens of thousands of New Jersey residents every year, Lyme disease. The participants came not only from Monmouth County but also from all over the state and from other states such as Pennsylvania and New York. They came as patients and as families and friends of patients to lend support to the NJ-based national Lyme Disease Association (LDA) for its first bike ride and walk, Spotlight on Lyme, held May 18 on scenic Sandy Hook.


 

Sandy Hook, a Peninsula bounded by the Atlantic Ocean to the East and Sandy Hook Bay to the West, is part of the Gateway National Parks Recreation Area. Bikers and walkers were treated on Sunday to the natural sand dunes which border the Atlantic Ocean and a spectacular view of the New York Skyline visible only on a clear day which Sunday was. Bright green shirts, symbolic of Lyme disease, with a lighthouse image spotlighting a tick, dotted the area under sunny skies, as the 50+bikers rode 15 miles and the 150 walkers went 3 miles, some participants with canes and in wheel chairs due to the devastating effects of their Lyme disease. 

Said Tinton Falls resident Joan Wire whose son participated in the walk in his wheel chair: “Lyme is a multi-systemic disease, the effects of which are not well publicized in New Jersey, so people are unaware of its debilitating nature. Today’s walk helped to change that picture by showing the victims of Lyme are everywhere in New Jersey and nationwide, and they are fighting for their very lives.” 

Many children registered for the event─ appropriate since children are at the highest risk of acquiring Lyme disease. They were able to participate in games and face painting and snack on donated food throughout the event. DJ, Dru, donated his services, playing music for the crowd. LDA President Pat Smith gave a brief talk before the event, wearing a different green tee shirt sporting the Minnesota Lyme Action Support Group Lyme Walk, which took place the day prior, sponsored by the by the LDA affiliate there. Ms. Smith mentioned that Lyme is a worldwide problem found in 65 countries and is in all 50 states here. Lyme walks are happening nationwide, one held for LDA in Maine and an upcoming one in Corning, New York by the LDA Chapter there. She also mentioned the need for passage of the federal Lyme bill (Smith NJ-4), bottled up in the House Health Subcommittee by Congressman Frank Pallone (NJ-6)—a bill which provides much needed Lyme research monies.

Walk Chairman Kim Cronin, Little Silver, was happy with Sunday’s turnout. She said: “We have opened the door for creating awareness here in Monmouth County and in New Jersey. Now is the time for that awareness, since so many more ticks carrying so many more diseases are biting us and our children. Our government has not taken a lead in awareness, so it is necessary for organizations like LDA who depend upon volunteers to become the leaders in this area.” When asked during the height of the event if she would chair another walk next year, she replied with a gin, “I am not sure now is a good time to ask.” Later however, she was seen reviewing paperwork for the 2009 walk/ride. 

New Jersey ranks third in CDC reported Lyme case numbers nationwide, with Monmouth County 2nd in cases in the State. NJ also has one of the highest incidences in the country for babesiosis, a malaria-like illness transmitted by the same deer tick that transmits Lyme disease. The deer tick is now joined by the more fast and aggressive Lone Star tick which is spreading STARI (Southern tick-associated rash illness), a Lyme-like disease with no viable test, and also other diseases. 

Many New Jerseyans currently suffer from co-infections, more than one tick-borne disease at the same time. Additional tick-borne diseases prevalent in NJ and the Northeast include anaplasmosis, ehrlichiosis, Rocky Mountain spotted fever, tularemia, tick paralysis and tick-borne Bartonella. Often these residents are unaware they have Lyme disease, since they may be misdiagnosed with MS, ALS, chronic fatigue, fibromyalgia, lupus, Alzheimer’s and sometimes, even autism.

According to LDA President Pat Smith, a Wall Township resident, “This walk was so well run and so necessary to Lyme disease here. We used to host many events in NJ in the 90s, but the lack of interest by government officials over time led to a lack of coverage and lack of interest by people. This event shows people’s hunger for knowledge and research for a cure─ Lyme disease has become a household word, yet government is still ignoring the rising numbers and ailing patients. It’s a travesty leading to people becoming much sicker than necessary if they were educated about the disease.”

ABOUT THE LYME DISEASE ASSOCIATION (LDA): —The Lyme Disease Association (LDA) is a national volunteer nonprofit based in Monmouth & Ocean Counties that devotes ninety-eight percent of its funds to programs–funding research, education, prevention and patient support. LDA-has funded research projects coast to coast─some of which have been published in peer review including JAMA, Neurology, Infection, and the Proceedings of the National Academy of Science. Recognizing that the ability to find solutions involves a multi-disciplinary effort, the LDA has partnered with businesses, patient groups, celebrities, government, and the medical community to unlock the secrets of Lyme and other tick-borne diseases. LDA and Time for Lyme, its Connecticut affiliate, raised funds and collaborated with Columbia University to open an endowed Lyme disease research center there in New York in 2007. LDA also has a fund for children with no insurance initiated by internationally acclaimed author Amy Tan. Go to www.LymeDiseaseAssociation.org.




Lyme Disease Association (LDA) Announces Lyme Walk/Ride on Sandy Hook

Press Contacts 
Kim Cronin LDA Walk Chairman kimcronin@msn.com 
Pat Smith LDA President Lymeliter@aol.com 

Media Advisory Media Advisory Media Advisory

Lyme Disease Association (LDA) Announces Lyme Walk/Ride on Sandy Hook
Lyme & Other Tick-Borne Diseases Continue to Rise in NJ 

Wall Township, May 12, 2008–The NJ-based national Lyme Disease Association (LDA) announces it is hosting a bike ride and a walk, Spotlight on Lyme, on May 18 in Monmouth County New Jersey. Participants have a choice of a 3 mile walk or 15 mile bike ride taking place on Sandy Hook to raise funds for the LDA for research to fight this debilitating disease and to raise awareness. New Jersey is third in the nation in CDC reported Lyme disease case numbers and Monmouth County ranks 2nd in case numbers in New Jersey.


 

Walk Chairman Kim Cronin, Little Silver, says: “We need much more awareness about Lyme disease all over New Jersey but particularly in the Jersey Sore area. Little is being done to prepare the public and our kids about how to prevent a tick bite, what to do when you are bitten, and what to do after you have Lyme disease. Little monies are being spent on Lyme education or research, so we need to focus on the disease and on raising funds to spotlight prevention and a cure. “

NJ has one of the highest incidences in the country for babesiosis, which is a malaria-like illness transmitted by the same deer tick that causes Lyme disease. Deer ticks are being joined by more aggressive Lone Star ticks which are spreading STARI, a Lyme-like illness with no viable test, and also other diseases. Additional tick-borne diseases prevalent in the Northeast include anaplasmosis, ehrlichiosis, Rocky Mountain spotted fever, tularemia, tick paralysis and tick-borne Bartonella. 

Special attention needs to be paid to tick-borne diseases in children, since age groups 5-9 and 10-14 years are at highest risk of acquiring Lyme disease. Unfortunately, too many people are unaware that Lyme disease can interfere with the learning process─neurologic Lyme can even cause a drop in IQ for some students, which can usually be rectified with treatment. Since the disease is often misdiagnosed or has a delayed diagnosis, Lyme disease can attack every system in the body and produce cardiac, neurologic, musculo-skeletal, ophthalmologic, and psychiatric manifestations.

According to LDA President Pat Smith, “Chronic Lyme disease is often misdiagnosed as MS, ALS, chronic fatigue, fibromyalgia, lupus, Alhheimer’s and sometims even autism. Patient organizations such as LDA are providing some of the only monies for research into chronic Lyme disease. Government has ignored the plight of these very sick patients, and more research needs to be done to answer the tough questions, such as why some people do not get totally better.” HR 741, the Lyme bill, which would provide needed federal research funds, is stuck in the US House of Representatives Energy & Commerce Health Subcommittee. 

ABOUT THE WALK & RIDE: The event will be held on Sandy Hook Gateway National Park, New Jersey-Beach Area E Sunday, May 18, 2008, 9am check-in, Rain or Shine. Registration for adults is $25 and for children 13 and under is $15. Credit card registration can be done online through 6pm May 14 (www.LymeDiseaseAssociation.org) and registrations after that time will then be accepted the day of the event, by cash and check only. Games, DJ, face painting, prizes and food will be a part of the event festivities. Helmets are required and a waiver needs to be signed prior to participating in the event. Children 13 & under must be accompanied by an adult.

ABOUT THE LYME DISEASE ASSOCIATION (LDA): —The Lyme Disease Association (LDA) is a national volunteer nonprofit based in Monmouth & Ocean Counties that devotes ninety-eight percent of its funds to programs–funding research, education, prevention and patient support. LDA-has funded research projects coast to coast─some has been has been published in peer review including JAMA, Neurology, Infection, and the Proceedings of the National Academy of Science. Recognizing that the ability to find solutions involves a multi-disciplinary effort, the LDA has partnered with businesses, patient groups, celebrities, government, and the medical community to unlock the secrets of Lyme and other tick-borne diseases. LDA and Time for Lyme, its Connecticut affiliate, raised funds and collaborated with Columbia University to open an endowed Lyme disease research center there in New York in 2007. LDA also has a fund for children with no insurance initiated by internationally acclaimed author Amy Tan. Go to www.LymeDiseaseAssociation.org.




Lyme Disease Physicians and Patients Expose Research Group’s Ploy to Silence Them

FOR IMMEDIATE RELEASE CONTACT:
April 9, 2008 Nicole Rodgers or Eliza Brinkmeyer 202-822-5200, ext. 249/226 

Lyme Disease Physicians and Patients Expose Research Group’s Ploy to Silence Them

Already caught up in an anti-trust investigation, IDSA opposes research bill in order to maintain monopoly over Lyme diagnosis and treatment options

Washington, DC – Physicians specializing in treating chronic Lyme disease and a national coalition of Lyme disease patients and their families today accused a medical research group of trying to exercise monopoly control over research on Lyme and tick-borne diseases.


“We’re very disappointed,” said Pat Smith, president of the national Lyme Disease Association (LDA), responding to a letter to Congress by the Infectious Diseases Society of America (IDSA) that seeks to deny patients a voice regarding the research needed to better understand the disease.

Lyme disease is a serious bacterial infection that develops from the bite of an infected tick. The disease is often misdiagnosed or goes untreated, causing many patients to suffer persistent health problems, including neurological disorders, crippling muscle and joint pain, disabling fatigue, psychological disorders, and even death. Even when Lyme disease is caught early and treated with a short course of antibiotics, the debilitating symptoms can persist and require additional longer-term treatment.

In March, IDSA wrote Congress attacking the Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2007, introduced by Chris Smith (R-NJ) and Bart Stupak (D-MI) in the House, and Christopher Dodd (D-CT), Charles Schumer (D-NY) and Chuck Hagel (R-NE) in the Senate. The broadly supported bipartisan bill calls for acceleration of Lyme disease research and creates a new federal advisory committee made up of the full range of scientific viewpoints on Lyme, including a seat for patient advocacy groups.

The IDSA is currently under investigation by the Connecticut Attorney General for abuse of monopoly power and exclusionary conduct in formulating its Lyme disease guidelines, which were developed by a panel that held significant commercial interests in diagnostic tests, vaccines, and consulting arrangements. In its letter to Congress opposing the Lyme Bill, the IDSA failed to mention this ongoing investigation.

IDSA researchers have virtually controlled Lyme disease research for the past 30 years amidst ongoing controversy surrounding its guidelines, which deny patients the right to treatment options and undermine the ability of physicians to use their clinical discretion in treating patients. IDSA provides private health insurance companies with the basis for denying long-term treatment for chronic Lyme disease.

The California Lyme Disease Association (CALDA), national Lyme Disease Association (LDA) and Time for Lyme (TFL) are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and support services available for this newly emerging infection.




Lyme Disease Association & Mercy Hospital Announce Lyme Disease Forum

Press Contacts 
Local: Heather Okun hokun@epix.net
National: Pat Smith – Lymeliter@aol.com 888 366 6611

Media Advisory        Media Advisory        Media Advisory

Lyme Disease Association & Mercy Hospital Announce Lyme Disease Forum
Local University Student Gives Back to Community after delayed diagnosis changes life

Scranton, Pennsylvania, March 10, 2008–The national Lyme Disease Association (LDA) announces a free public forum to be held at Mercy Hospital on March 31, 2008, 7-10PM, on Lyme and other tick-borne diseases. Featured speakers include Dr. Richard Horowitz, Hyde Park New York, who will discuss the diagnosis and treatment of Lyme disease; and Patricia Smith, Wall Township New Jersey, President of the Lyme Disease Association, who will present the spread of tick-borne diseases and the problems faced by patients.


 

Lyme is the most prevalent vector-borne disease in the country, and it has been joined by other emerging co-infections in the Northeast including babesiosis, anaplasmosis/ ehrlichiosis, and tick-borne Bartonella, transmitted by the bite of the same deer ticks that carry the Lyme disease bacteria. Pennsylvania has consistently ranked number 2 nationwide in reported case numbers of Lyme disease. The NE District in Pennsylvania, which includes Lackawanna County, ranks third of 6 districts in 2006 case numbers and 3rd in incidence over 5 years.

This forum was developed in conjunction with Heather Okun, Marywood student, as part of her professional program at Marywood University. After suffering a tick-bite as a teen, she developed severe cognitive problems that dropped her grades while in high school; yet, she remained undiagnosed for Lyme disease for two years. Heather had intended to become a veterinarian. Subsequent to treatment and then a relapse, however, she was seen by a physician’s office that employed physician’s assistants (PA). Then and there, she decided that she would study to become a PA. Heather, who, is on the verge of graduation, will also be a conference speaker. She says, “It seems appropriate that for my professional contribution which is required for graduation, I tell my story and educate others about this disease that changed my life.” 

Heather’s experience with her Lyme disease not being recognized, is not an uncommon one, especially in children. They are a special concern, because age groups 5-14 years are at highest risk of acquiring Lyme disease. Unfortunately, too many people are unaware that Lyme disease can interfere with the learning process and that many students require special accommodations in the classroom as a result. And since the disease is often misdiagnosed or diagnosed months or years after infection, Lyme disease can cause numerous ongoing physical problems involving the cardiac, neurologic, and musculo-skeletal systems, and it can manifest as psychiatric problems. Neurologic Lyme can even cause a drop in IQ for some students, which can usually be rectified with treatment.

Says LDA President Patricia V. Smith, “LDA has been happy to work with Heather and with Mercy Hospital to provide this forum in an area where Lyme and other tick-borne diseases are too often overlooked as a diagnosis. Awareness is certainly the key to prevention of this disease, and more research needs to be done to answer the tough questions, such as why some people do not get totally better.” 

ABOUT THE LYME DISEASE ASSOCIATION (LDA): —The Lyme Disease Association (LDA) is a national volunteer run nonprofit that devotes ninety-six percent of its funds to programs–funding research, education, prevention and patient support. LDA-funded research has been published in peer review including JAMA, Neurology, Infection, and the Proceedings of the National Academy of Science. Recognizing that the ability to find solutions involves a multi-disciplinary effort, the LDA has partnered with businesses, patient groups, celebrities, government, and the medical community to unlock the secrets of Lyme and other tick-borne diseases. LDA and Time for Lyme, its Greenwich, Connecticut affiliate, collaborated to raise funds to open in 2007 the Lyme & Tick-Borne Diseases Research Center at Columbia University in New York which will coordinate research projects from across the country. LDA is currently planning its 9th fully CME accredited medical conference for physicians on Lyme and other tick- borne diseases to be held in San Francisco in October 2008. Go to LymeDiseaseAssociation.org.




National Association Announces Eastern Connecticut Lyme Chapter

Press Contacts 
Local: Kimberlee Pappa – easternctlda@yahoo.com 
National: Pat Smith – Lymeliter@aol.com

PRESS RELEASE FOR IMMEDIATE RELEASE

National Association Announces Eastern Connecticut Lyme Chapter
Eastern counties high in disease, low in awareness, says new LDA chapter chair

NORWICH, CONNECTICUT, November 26, 2007–The national Lyme Disease Association (LDA) announces the formation of the Lyme Disease Association, Eastern Connecticut Chapter (LDAECC), bringing the current total of LDA-associated 
organizations nationwide to 31.


LDAECC’s formation was initiated by a family personally affected by Lyme disease who is deeply concerned by the prevalence of this disease. Commenting on the formation, the new Chapter Chair, Kimberlee Pappa, of Sprague, Connecticut said, “As a businesswoman, every day I speak to people who have been affected by Lyme, and they are all reaching out for help and information. I want to be a resource for them.”

Lyme is the most prevalent vector-borne disease in the country, and it has been joined by other emerging co-infections in the Northeast including babesiosis, anaplasmosis (formerly ehrlichiosis), and tick-borne Bartonella, transmitted by the bite of the same deer ticks that carry the Lyme disease bacteria. Tolland County’s number of Lyme disease cases has increased by 95% from 2004 to 2006, with a corresponding 75% increase in New London County’s numbers.

Children are a special concern because age groups 5-14 years are at highest risk of acquiring Lyme disease. The Pappa Family has 2 children suffering from Lyme disease and therefore is aware of the learning difficulties caused by it. Unfortunately, too many parents are unaware that Lyme disease can interfere with the learning process and that many students require special accommodations in the classroom as a result. Lyme disease can cause numerous ongoing physical problems involving the cardiac, neurologic, and musculo-skeletal systems, especially if treatment is delayed or incomplete, and it can manifest as psychiatric problems. Neurologic Lyme can even cause a drop in IQ for some students, which can usually be rectified with treatment.

Says LDA President Patricia V. Smith, “I am delighted to announce the creation of this chapter, LDA’s 8th chapter, in an area which contains some of the highest Lyme disease occurrences in the country. Awareness is certainly the key to prevention of this disease, and more research needs to be done to answer the tough questions, such as why some people do not get totally better.” To that end, LDA and Time for Lyme, its Greenwich, Connecticut affiliate, collaborated to raise funds to open in 2007 the Lyme & Tick-Borne Diseases Research Center at Columbia University in New York.

The LDAECC will work to further the LDA’s mission of education, prevention, research, and patient support. LDAECC is looking for volunteers and support. Contact Kimberlee at easternctlda@yahoo.com 

ABOUT THE LYME DISEASE ASSOCIATION (LDA): LDA is a 501(c) 3 non-profit organization which has developed and presented many programs for children in the schools, for scouts, and to help children obtain diagnosis and treatment if they lack medical insurance for Lyme disease through the LymeAid 4 Kids fund. You can find out more information about both Lyme disease, including the numbers, and impact upon students (visit the Lyme in the Schools Section), and information on the Lyme Disease Association by visiting its website at www.LymeDiseaseAssociation.org.




Nationally Recognized Speaker to Address Lyme Case Increases & Controversy


CONTACT PERSON: Jill Kuschel – President
PHONE: 651-213-1200 
e-mail: jjkuschel5@yahoo.com 

FOR IMMEDIATE RELEASE

Nationally Recognized Speaker to Address Lyme Case Increases & Controversy
Three Lyme Forums: for Minnesota Officials, Chiropractors, Community at Large

Forest Lake, MN November 1 − The Minnesota Lyme Action Support Group is proud to host nationally recognized speaker Pat Smith, President of the national Lyme Disease Association, Inc. (LDA). Ms. Smith sits on the Strategic Development Board for Columbia University’s Lyme & Tick-Bore Diseases Research Center, which opened in New York in 2007. She is also former chair of the NJ Governor’s Lyme Disease Advisory Council.

 

Minnesota, with 7,080 cases reported by the Centers for Disease Control & Prevention (CDC) since 1990, ranks in the top 14 states in the US in case numbers. CDC says that only 10% of cases that meet its surveillance criteria are reported, thus 70,800 cases probably occurred over that period in the State.

In three separate forums, Ms. Smith will present an overview of Lyme disease issues to elected officials from the Twin Cities and Forest Lake, to the community, and to chiropractors. Each will include a segment on the Lyme disease controversy.

A by-invitation only Mayor’s Forum will be held on Tuesday Nov. 13,th 9:00am-11:30am at the new Washington County Service Center. 19955 Forest Road N. Forest Lake, MN 55025. The topic is “An Overview of Lyme Disease: Its Impact Nationally, on States, and on You.” Officials should contact Rachel Berger Phone-715-749-3990 bergerrl@sbcglobal.net for registration. A press conference will follow the forum.

The free community forum will be presented on Tuesday, November 13th at 7pm at Hosanna Lutheran Church in Forest Lake. The topic that night will focus on “An Overview of Lyme Disease: What is it, its impact, and what should we do?” All are invited to attend. For further information contact Rachel Berger Phone-715-749-3990 bergerrl@sbcglobal.net

The forum for chiropractors will provide information about the national impact of Lyme, how it is spread, outline the problems with appropriate diagnosis and treatment and discuss the rise in reported cases. To sign up contact Rachel Berger Phone-715-749-3990 bergerrl@sbcglobal.net

ABOUT THE LDA: The LDA is a national non-profit corporation dedicated to raising funds for Lyme disease education, prevention, research and patient support. LDA has 31 associated organizations nationwide. See www.LymeDiseaseAssociation.org for information on LDA and on Lyme disease.

ABOUT MIINNESOTA LYME ACTION SUPPORT GROUP: The Mission of the Minnesota Lyme Action Support Group is to support and conduct educational and informational activities which serve to increase the public awareness of Lyme disease and other tick-borne illnesses.

Purpose: To offer support to those diagnosed with Lyme disease and to their families.
To promote the education of health care professionals regarding the diagnosis and treatment of Lyme disease and other tick-borne illnesses. To raise funds for education and research involving Lyme disease and tick-borne illnesses.




Controversies in Lyme Disease Treatment and Diagnosis to be Debated at Lyme Disease Association Conference in Newton, MA

***MEDIA ADVISORY***MEDIA ADVISORY***MEDIA ADVISORY***

Controversies in Lyme Disease Treatment and Diagnosis to be Debated at Lyme Disease Association Conference in Newton, MA

WHAT:
Researchers and physicians from throughout the world will gather on Friday, Oct. 26, 2007 to discuss the latest research about Lyme disease including diagnosis and treatment options. The meeting is a fully CME accredited annual medical conference, co-sponsored by the Lyme Disease Association and Columbia University College of Physicians and Surgeons.


At 5:15 PM, Dr. Raphael Stricker, president of the International Lyme and Associated Diseases Society (ILADS), will debate Dr. Paul Auwaerter of Johns Hopkins University School of Medicine about one of the most polarizing healthcare issues today: the two standards of care for Lyme disease, one advocating short-term treatment (IDSA guidelines) and the other advocating long-term treatment (ILADS guidelines.)

Media are invited to attend the debate at 5:15pm, as well as attend selected sessions throughout the day, which runs from 8AM to 6:30PM. Conference speakers and attendees are available for interviews.

WHY:
Earlier this month, exactly one year after the Infectious Diseases Society of America (IDSA) issued practice guidelines severely limiting doctors’ discretion in treating thousands of Lyme disease patients, the New England Journal of Medicine published a review arguing that there is no medical basis for Chronic Lyme disease. This debate continues between medical experts who support the IDSA guidelines and those doctors and patients who find the guidelines restrictive and counter to their successful experience with long-term antibiotic treatment. The Connecticut Attorney General’s office has even launched an on-going investigation into the development of the IDSA guidelines.

Lyme disease is the most common vector-borne (insect- or tick-borne) disease in the world today. The CDC has indicated that only 10 percent of the cases that meet its surveillance criteria are actually reported. No one keeps track of the numbers of cases that do not meet the surveillance criteria, cases that are physician-diagnosed clinically and the ones that most often develop into chronic disease. According to a Columbia University study funded by the National Institutes of Health, on average, patients with chronic Lyme disease have symptoms for more than one year before being correctly diagnosed.

Why is this especially critical in Massachusetts?
 Lyme disease is a serious public health issue, and Massachusetts ranks 5th nationally in CDC reported cases from 1990 through 2006 with 14,248 reported cases over that period.
 Since CDC indicates only 10 % of cases meeting its surveillance criteria are reported, about 142,480 cases probably occurred over that time period in Massachusetts.
 National figures over the same time period record 265,486 cases, thus more than 2.6 million cases which meet the surveillance criteria probably occurred.

WHERE:
Boston Marriott Newton, 2345 Commonwealth Avenue Newton, MA

WHO: 
Dr. Raphael Stricker, president, International Lyme and Associated Diseases (ILADS),
Pat Smith, president, Lyme Disease Association
Variety of patients

CONTACT: Vicky Jaffe, MS&L, (617) 937-2578, Vicky.jaffe@mslpr.com
More information at www.LymeDiseaseAssociation.org




NEJM Owes Patients Responsible Journalism Says Lyme Disease Association

NEJM Owes Patients Responsible Journalism Says Lyme Disease Association

Jackson, NJ, October 4, 2007-The New England Journal of Medicine (NEJM) published an article October 3 titled A Clinical Appraisal of "Chronic Lyme Disease." Eleven of its authors also served on the IDSA Lyme Disease Guidelines panel which is under investigation by the Connecticut Attorney General for the development of those Guidelines. Although the article mentions the investigation, nowhere does it disclose that these authors are under investigation. What sanctions does a journal of the stature of NEJM impose on authors who do not fully disclose?


In an unscholarly tone uncharacteristic of NEJM, the article concludes there is no chronic Lyme disease, and patients should not receive treatment. It tells doctors how to deliver that message to patients. It implicates Lyme disease groups established by "laypeople" as being part of the problem rather than part of the solution. Yet the article offers no solutions as to how to identify what these patients do have or what can be done while this issue is resolved. Worse, the article precludes the exercise of clinical judgment, which physicians usually rely on in areas of uncertainty. 

NEJM is used by physicians worldwide, but this article provides an appendix of author-selected science that physicians use to deny patients diagnosis and treatment and excludes the science in opposition. A balanced peer review process that included divergent viewpoints would have prevented this. No one benefits from foreclosing debate on open scientific issues. The problem in Lyme disease is not the patients or their treating physicians, but the suppression of divergent viewpoints. Without open public debate, critical questions never reach the research agendas. What responsibility does the NEJM have to provide "the whole truth" to its readers? 

NEJM has done a disservice to patients who are sick with Lyme disease and who now will be unable to get a diagnosis and treatment. Isn’t it time that responsible, rational people stop recycling the same rhetoric from the same people and instead choose to sit at the table together to find out why tens of thousands of people are left to suffer without diagnosis and without treatment?

Patricia V. Smith
President, Lyme Disease Association
888-366-6611
Lymeliter@aol.com

ABOUT the Lyme Disease Association (LDA)
LDA is a national non-profit patient organization dedicated to Lyme disease prevention, education, research, and patient support. LDA has chapters, affiliates, and support organizations across the country. See www.LymeDiseaseAssociation.org for details.




A FIRST! LYME & TICK-BORNE DISEASES RESEARCH CENTER OPENS AT COLUMBIA THROUGH PARTNERSHIP WITH LYME DISEASE ASSOCIATION & TIME FOR LYME

Contact: Pat Smith, Lyme Disease Association, Inc. 

email: Lymeliter@aol.com or 888-366-6611
For Immediate Release

A FIRST! LYME & TICK-BORNE DISEASES RESEARCH CENTER OPENS AT COLUMBIA THROUGH PARTNERSHIP WITH LYME DISEASE ASSOCIATION & TIME FOR LYME 

Author Amy Tan calls it “Center for Hope” for patients

Wall Township, NJ, April 2007 – In a move that coincides with scientific concern worldwide over global warming and the resultant increase in the range and numbers of ticks and tick-borne diseases, Columbia University Medical Center is opening the first endowed research center for chronic Lyme disease in the world on April 30. The Lyme & Tick-Borne Diseases Research Center in New York will use its vast resources to bring together various disciplines from within and outside of the University to address fundamental clinical and basic science questions that plague adults and children affected by Lyme disease.


According to Brian A. Fallon, MD, the new center director, “Benefits accrue exponentially when scientists from multiple disciplines apply their specific expertise to solve complex problems. This is what is so tremendously valuable about this new Lyme and Tick-Borne Diseases Research Center at Columbia, as the solutions to fundamental diagnostic and treatment questions require the coordinated effort of highly skilled scientists using the latest in biotechnology that only a university-based center can provide.” Dr. Fallon is also associate professor of psychiatry at Columbia University and director of the Lyme Disease Research Program, New York State Psychiatric Institute.

The Center’s clinical and research mission includes studies of new diagnostic tests, clinical phenomenology, immunopathogenesis, co-infections, genetic markers of vulnerability, brain imaging, neuoropathology of post-mortem brains, well-controlled studies of new treatments and tick pathogens. This Center will serve as a national resource, providing pilot grants to researchers nation-wide and focusing the latest scientific technology on helping to resolve the problems of chronic Lyme disease. 

As Lyme cases increase worldwide, so does the development of chronic disease which may result from a delayed diagnosis and delayed or inadequate treatment. While much is known about early Lyme disease, relatively little is known about chronic Lyme disease, despite its disabling effects, which may include arthritis, cognitive loss, peripheral neuropathies, and debilitating fatigue. Sometimes, Lyme may also cause strokes, blindness, severe psychiatric disorders, and multiple-sclerosis-like illnesses. Adults may become permanently disabled, and children may be home sick for months or years, missing the key academic and social influences so critical to healthy development.

Internationally acclaimed author (and Lyme patient) Amy Tan expresses “my deep gratitude to all those whose commitment helped create this world-class center for Lyme disease research. For many of us, it is also a center for hope. We now know there is support for the best minds in science and medicine to work toward more accurate diagnosis and more effective treatment of a widespread and devastating disease.” 

The national New Jersey-based Lyme Disease Association, Inc. (LDA) and Connecticut-based Time For Lyme (TFL) who are affiliated organizations, partnered with Columbia in the development of this center concept and devoted a large percent of their efforts and resources in the past 5 years to funding the endowment for the Center. People nationwide contributed to make this effort a success. Pat Smith, LDA President, said of the opening, “This is a banner day for everyone connected to Lyme disease and those at risk for tick-borne diseases. Columbia University now houses a premier center which will focus efforts on a definitive Lyme test, chronic Lyme disease, tissue studies, and even tick pathogens. The unsettled science which has clouded diagnosis and treatment will be closely examined in an environment where researchers are interested in discovering the truth about Lyme disease.”

About Lyme Disease Association—The Lyme Disease Association (LDA) is a national nonprofit all-volunteer organization that devotes ninety-eight percent of its funds to programs-funding research, education, prevention and patient support. LDA-funded research has been published in peer review including JAMA, Neurology, Infection, and the Proceedings of the National Academy of Science. Recognizing that the ability to find solutions involves a multi-disciplinary effort, the LDA has partnered with businesses, patient groups, celebrities, government, and the medical community to unlock the secrets of Lyme and other tick-borne diseases. LDA is currently planning its 8th fully CME accredited medical conference for physicians on Lyme and other tick- borne diseases. Go to LymeDiseaseAssociation.org

About Time for Lyme—TFL, affiliate of Lyme Disease Association, is an organization dedicated to eliminating the devastating effects of Lyme and other tick-borne diseases. Its mission is to prevent the spread of disease, develop definitive diagnostic tools and effective treatments, and to ultimately find a cure for tick-borne illness by supporting research, education, and the acquisition and dissemination of information. In addition, TFL advocates for Lyme disease sufferers and their families through support of legislative reform on the federal, state and local levels. For more information on TFL, please visit www.timeforlyme.org

About Dr. Brian A. Fallon, MD, MPH—He is Associate Professor at Columbia University College of Physicians and Surgeons and director of the Lyme Disease Research Program at the New York State Psychiatric Institute. He graduated from Harvard, got his M.D. and a MPH from Columbia University College of Physicians and Surgeons. He has dozens of publications in the Lyme disease field and much of his work has been supported by NIH grants and has been acclaimed internationally.




National Lyme Disease Association President Addresses Maryland House of Delegates Rural Caucus

March 9, 2007
National Contact Pat Smith
888-366-6611
Lymeliter@aol.com
www.LymeDiseaseAssociation.org (pictures available)

PRESS RELEASE FOR IMMEDIATE RELEASE

National Lyme Disease Association President Addresses Maryland House of Delegates Rural Caucus
Focus on research and help for Maryland patients who cannot get diagnosed & treated

Annapolis, March 9—In a presentation before the Maryland House Rural Caucus, 40 delegates heard the President of the national Lyme Disease Association (LDA) provide an overview of Lyme disease, types of research being carried out on the disease in Maryland, and examples of why Maryland patients often cannot get diagnosed or treated.
 


According to LDA President Pat Smith, whose organization has affiliated groups in Maryland, cases here have drastically increased, and Maryland is now “7th in total case numbers in 2005 (1235) and 9th in rate of incidence (22.1/100,000 pop.). The Centers for Disease Control & Prevention (CDC) states that only 10% of cases that meet its narrow surveillance criteria are reported, therefore about 12,350 new cases of Lyme disease occurred in Maryland in 2005. That number does NOT, in any way, count the number of people contracting Lyme who do not meet the CDC criteria, which are for surveillance, not diagnostic, purposes.”  She expressed grave concern for the risk to children, since CDC statistics indicate Lyme is most common in boys ages 5-19 and combined boys & girls, ages 5-9.

Throughout her presentation, Ms. Smith mentioned spreading tick populations, new strains of the bacteria that cause Lyme and new organisms being carried by ticks. The LDA has funded research mapping the genome of different strains of the Lyme disease bacterium, the mapping carried out by The Institute for Genomic Research, TIGR, in Rockville. The research has shown that different strains can mix their genetic material, giving the bacteria better survival characteristics.

LDA has also funded a joint NASA/NIH research project taking place at the National Institutes of Health which is looking at the bacterium found in a much more aggressive tick which is expanding its range–traditionally a southern one, and now as far north as Massachusetts and Maine. The lone star tick carries a bacterium similar to the one which cases Lyme disease but it produces a Lyme-like disease called STARI (Southern tick-associated rash illness) which is found in Maryland patients.

The LDA and the Army have been sharing tick research information, and she informed the delegates about work from US Army CHPPM, Aberdeen Proving Grounds, which has developed a laptop sized device which can test ticks in the field for any known pathogen so that troops could eventually be able to receive immediate treatment for tick-bites in the field. This research needs to be brought into the civilian arena, she told the Army on her visit there.

Unfortunately, the government is not focusing enough monies on the disease, $32.6 million in 2005 compared to West Nile Virus at $80.8 million. Therefore, LDA and its allied organizations support the passage of HR 741, introduced into the US House of Representatives in January 2007. Six of 8 Maryland Congressman are already co-sponsors of the Smith/Stupak bill, which provides $100 million over 5 years for research, prevention, physician education and formation of a federal task force.

LDA and four congressmen including Wayne Gilchrest (MD-1) met with CDC Director Dr. Julie Gerberding in July of 2006 to discuss the lack of focus on the disease and policies which affect diagnosis and treatment of patients. The CDC and LA have had continued dialogue on this issue.

Ms. Smith made the delegates aware of the investigation initiated by Connecticut Attorney General Richard Blumenthal. This action has been taken against the Infectious Diseases Society of America who recently released guidelines that recommend against doctor discretion and against all forms of treatment for chronic Lyme disease. The restrictive guidelines are causing insurance companies to cut off patients and causing some doctors not to treat chronic Lyme disease, a debilitating condition which can attack the joints, muscles, heart, and the brain 

LDA and Time for Lyme, its Connecticut affiliate, are preparing to announce the opening of the first endowed chronic Lyme disease research center at Columbia University in New York in the Spring of 2007. “All patients can benefit from a major institution focusing on chronic Lyme disease research,” says LDA President. “If government won’t provide the focus, patients will,” she added.