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Prominent Researchers: The State of Lyme Disease: Progress & Challenges

Top Lyme disease researchers from across the United States have collaborated on a new publication, Recent Progress in Lyme Disease and Remaining Challenges. In this review article, researchers summarize the state of Lyme over the past 5 years, addressing major scientific advances as well as identifying remaining challenges and needs. Topics covered in the publication include diagnosis, testing, signs and symptoms of disease, treatment, genomics, vector transmission, pathogenesis, persistence of disease, and prevention and funding. The long-term impact of Lyme disease on patients has historically been controversial, however the authors present escalating evidence that supports the idea that a great number of patients experience persistent symptoms following treatment, and that this number continues to grow. 

Necessary funding to support advancement in the scientific and clinical understanding of the disease, or to develop and evaluate innovative approaches for prevention, diagnosis, and treatment has been greatly lacking in the research community, and authors highlight the urgent need for more support. Although Lyme disease is a growing public health concern globally, this review article focuses primarily on the condition and resources of the United States.

Read the full review article here

Read more LDA articles here




Patients Win! Columbia Gets $16M to Establish Treatment Center/Trials Network

Dr. Brian Fallon
Brian Fallon, MD

A new center at Columbia University will open this summer to patients. The Cohen Center for Health & Recovery from Tick-Borne Diseases has been established through a $16M grant from the Steven & Alexandra Cohen Foundation to Columbia. Brian Fallon, MD, will be Center Director, Shannon Delaney, MD, co-director. Patients at the Center will be invited to enroll in clinical trials, brain imaging and neuropsychiatric studies. Physicians will be invited to annually submit treatment study ideas to the trials network for consideration.

Lyme Disease Association Pat Smith had this to say:  “This is the best possible news for patients who have been neglected for decades by much of the medical community. Often unable to get a timely diagnosis and appropriate treatment, many patients have gone on to develop chronic Lyme disease, facing debilitating manifestations, which have prevented them from working or going to school and even causing death.  Having a Treatment Center, a Clinical Trials Network, and a Research Center in one institution will certainly provide a three prong attack on a disease causing 476,000 people annually to be diagnosed and treated in the U.S.–Lyme disease–and allows for other tick-borne diseases to be addressed at the same time. ”

Dr. Fallon is also Director of the Columbia Lyme & Tick-Borne Diseases Research center, which was established in 2008 by the Lyme Disease Association Inc. and Time for Lyme (now GLA).

Thanks to the Cohen Foundation!   Congratulations to Drs. Fallon and Delaney!
 
 
 



Prescription & Medical Bill Assistance

The Lyme Disease Association, Inc. is providing the following list as a courtesy to those seeking resources that may be helpful in treating and covering the cost of treating Lyme disease. The LDA neither warrants nor endorses the Prescription & Medical Bill Assistance resources contained on this list nor the quality of service you will receive from them. We do not make recommendations, only referrals. 

America’s Pharmacy
A nationwide prescription savings program that has helped people save up to 80% on out-of-pocket medication costs. https://www.americaspharmacy.com/

Free Prescription Medications
Free prescription medications listings are provided by Needy Meds. Needy Meds is NOT a drug assistance program, they are an information provider. They provide information on manufacturer based drug assistance programs to help consumers in obtaining medications that are not covered by any insurance plan or would otherwise be too expensive. Consumers are provided information on applying for each medication/program. Program requirements may differ from drug to drug. LDA is not affiliated with Needy Meds.

Medical Bill Assistance
Medical Needs Foundation
PO Box 303
Mountain Lks, NJ 07046
Provides assistance with medical bills around Morris County NJ area

Compassionate Use Program for Mepron
For Healthcare Professionals that would like to make a request for compassionate use of a GSK investigational medicine. https://gsk-cu-portal.idea-point.com/

Lyme Test Assistance
The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. http://www.lymetap.com/

LymeLight Foundation – Grants
Anyone diagnosed with Lyme disease up to age 25 and can demonstrate a qualified financial need. Applicant must be an active patient of a Lyme-literate MD, ND or DO. http://lymelightfoundation.org/grants/

LivLyme Foundation
Provides treatment grants for those under age 21. https://livlymefoundation.org/

Ticked Off Foundation
Provides grants and counseling to Lyme patients in crisis – Ages 26 and up. https://www.tickedofffoundation.org/

United Healthcare Children’s Foundation Medical Grants
Provides medical grants to help children gain access to health-related services not covered, or not fully covered, by their families commercial health insurance plan. Families can receive up to $5,000 per child ($10,000 lifetime maximum per child), and do not need to have insurance through UnitedHealthcare to be eligible. Children must be 16 or younger and living in the United States. Help can be for physical, occupational and speech therapies, surgeries, counseling, prescription medications, or medical equipment including: wheelchairs, orthotics, eyeglasses and hearing aids. http://www.uhccf.org/apply/ 

Disclaimer: Resources that are not part of the LDA may or may not be supportive of a chronic Lyme diagnosis but may support other conditions and factors that children may need, like wheelchairs and other modalities. It is up to the consumer and their medical practitioners to evaluate their child’s needs and if this program would be beneficial.




LymeAid 4 Kids Provided $400,400 in Grants Since 2004

About LymeAid 4 Kids (LA4K) – The Lyme Disease Association started LA4K fund in 2003 and has distributed monies for  children all over the U.S.since 2004,  Developed with the help of author Amy Tan, the fund is for children who do not have insurance coverage or receive reimbursement for Lyme disease treatment/diagnosis and whose families have economic difficulties. Donations can be made on-line to LDA to help the LA4K fund, as there are so many applicants in the U.S.that the fund does run out of money frequently. (In 2005, LDA awarded monies to two families in Canada, but there are so many families in need in the U.S, that LDA limited it to U.S. families only).                                                                              Click here for application

LymeAid4Kids Logo2014Small

 

 

Total Funds distributed since 2004 totals $400,400

 

 

In 2020, 17 applicants were awarded grants for a total of $17,000:

2 California

4 Connecticut

1 Florida

1 Maryland

1 Montana

1 Oregon

5 Pennsylvania

1 Rhode Island

1 Virginia

 

In 2019, 38 applicants were awarded grants for a total of $38,000:
1 California
2 Connecticut
1 Florida
1 Idaho
8 Maryland
1 New York
23 Pennsylvania
1 Virginia

In 2018, 7 applicants were awarded grants for a total of $7000:
1 Pennsylvania
2 Maryland
1 North Carolina
1 Tennessee
2 Mississippi

In 2017, 18 applicants were awarded grants for a total of $17,400:
4 Oregon
5 Connecticut
1 New York
1 Pennsylvania
4 Maryland
1 Indiana
1 Kansas
1 Idaho

In 2016, 45 applicants were awarded grants for a total of $45,000:
6 New York
2 Ohio
2 Oregon
1 Texas
5 California
1 Illinois
2 North Carolina
1 Michigan
1 Mississippi
2 Tennessee
5 New Jersey
7 Virginia
4 Pennsylvania
3 Massachusetts
1 Maine
1 Connecticut
1 Florida

In 2015, 26 applicants were awarded grants for a total of $26,000:
6 Maine
4 Ohio
1 Connecticut
1 Michigan
2 Washington
2 New York
1 Illinois
1 North Carolina
3 Indiana
1 California
1 Oklahoma
3 Oregon

In 2014, 9 applicants were awarded grants for a total of $9000:
1 Texas
1 Washington
1 Wisconson
1 Maryland
1 Illinois
2 Connecticut
1 New York
1 California

In 2013, 9 applicants were awarded grants for a total of $9,000:

5 California
1 New Jersey
2 New York
1 Wisconsin

In 2012, 11 applicants were awarded grants for a total of $11,000:
3 Idaho
1 Illinois
1 Iowa
2 New York
1 Massachusetts
1 Tennessee
1 Wisconsin
1 Florida

In 2011, 35 applicants were awarded grants for a total of $35,000:
1 British Columbia
3 California
2 Connecticut
2 Georgia
5 Iowa
4 Illinois
2 Massachusetts
2 Missouri
1 New Hampshire
4 New Jersey
1 New York
3 Ohio
2 Pennsylvania
1 Rhode Island
1 Texas
1 Washington

In 2010, 29 applicants were awarded grants for a total of $29,000:
3 California for a total of $3,000
5 Connecticut for a total of $5,000
1 Georgia for a total of $1,000
3 Illinois for a total of $3,000
1 Maine for a total of $1,000
1 Missouri for a total of $1,000
2 New Hampshire for a total of $2,000
3 New Jersey for a total of $3,000
4 New York for a total of $4,000
1 Pennsylvania for a total of $1,000
1 Rhode Island for a total of $1,000
1 South Carolina for a total of $1,000
3 Virginia for a total of $3,000

In 2009, 20 applicants were awarded grants for a total of $20,000:
4 Connecticut for a total of $4,000
3 Massachusetts for a total of $3,000
1 Rhode Island for a total of $1,000
2 New Jersey for a total of $2,000
2 California for a total of $2,000
2 New York for a total of $2,000
3 Pennsylvania for a total of $3,000
2 Nevada for a total of $2,000
1 British Columbia for a total of $1,000 

In 2008, 36 applicants were awarded grants for a total of $36,000:
1 Ohio for a total of $1,000
1 Rhode Island for a total of $1,000
1 Maine for a total of $1,000
3 Massachusetts for a total of $3,000
6 New York for a total of $6,000
1 Tennessee for a total of $1,000
2 California for a total of $2,000
2 Pennsylvania for a total of $2,000
4 Connecticut for a total of $4,000
1 Florida for a total of $1,000
4 Kansas for a total of $4,000
1 New Hampshire for a total of $1,000
4 Texas for a total of $4,000
3 Georgia for a total of $3,000
2 New Jersey for a total of $2,000

In 2007, 45 applicants were awarded grants for a total of $45,000:
1 California for a total of $1,000
6 Connecticut for a total of $6,000 
1 Florida for a total of $1,000
2 Georgia for a total of $2,000
4 Illinois for a total of $4,000
3 Indiana for a total of $3,000
1 Iowa for a total of $1,000
2 Massachusetts for a total of $2,000* 
3 New Hampshire for a total of $3,000 
1 New Mexico for a total of $1,000 
5 New York for a total of $5,000
2 Ohio for a total of $2,000
8 Pennsylvania for a total of $8,000
1 Rhode Island for a total of $1,000
1 Texas for a total of $1,000 
1 West Virginia for a total of $1,000 
1 Wisconsin for a total of $1,000
2 Canada, (have US doctors) for a total of $2,000

In 2006,19 applicants were awarded grants for a total of $19,000:
1 Connecticut for a total of $1,000 
3 Pennsylvania for a total of $3,000 
8 Massachusetts for a total of $8,000 
3 New York for a total of $3,000
1 California for a total of $1,000
1 Arizona for a total of $1,000
1 Maryland for a total of $1,000
1 Illinois for a total of $1,000 

In 2005, 28 applicants were awarded grants for a total of $28,000: 
2 Rhode Island for a total of $2,000
1 Texas for a total of $1,000
2 New Jersey for a total of $2,000
1 Maine for a total of $1,000
6 California for a total of $6,000
3 Massachusetts for a total of $3,000
5 Connecticut for a total of $5,000
2 New York for a total of $2,000
4 Pennsylvania for a total of $4,000
2 Canada (have US doctors) for a total of $2,000

In 2004, 9 applicants were awarded grants for a total of $9,000: 
1 West Virginia for a total of $1,000
3 Texas for a total of $3,000
2 Connecticut for a total of $2,000
1 Massachusetts for a total of $1,000
1 Illinois for a total of $1,000
1 North Carolina for a total of $1,000

For more information on LymeAid 4 Kids click here




Public Service Announcements For You to Share

The Lyme Disease Association has prepared video and audio public service announcements which we are presenting here for you to view, listen to and use for any educational purposes.

A 30 Second Radio PSA on Lyme Disease

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Mary McDonnell Public Service Announcement

Star of the Peabody Award Winning TV show BattleStar Galactica worka with the LDA to develop a public service service announcement on Lyme Disease.

Ms. McDonnell stars as President Laura Roslin in the popular sci-fi series. She has starred in a number of movies including her Oscar-nominated roles in Dances with Wolves and Passion Fish. She serves as LDA’s national spokesperson on Lyme disease.

Click here for video


 The Global Spread of Chronic Lyme Disease 

Click here for video




Tick Testing

There are places where the public can have ticks tested to see if they contain the Lyme bacteria, Borrelia burgdorferi, or to see if they contain other disease organisms which can infect humans or other animals. There are generally charges for these services.

LDA does not make recommendations about whether people should have ticks tested, reliability of tick testing, or whether people should wait for the results before seeking/getting treatment. Those are decisions that need to be made after reviewing material on the topic and discussing the benefits/risks with a professional.
 
Check with the labs for proper packaging and mailing of the ticks, the types of organisms tested for and the associated costs (e.g., Lyme disease, anaplasmosis, ehrlichiosis)
 
Examples of Tick Testing Laboratories*
LDA does provide contact information on some tick testing labs.
Some examples of tick-testing labs

See IGeneX Labs CLIA certificate   http://www.personalconsult.com/CLIA.pdf

*From Lyme Disease Association’s LymeR Primer brochure.
Click here to download brochure.
 
Example of Government Testing Laboratories in Specific Areas

1)  Monmouth County (NJ)  Mosquito Control Tick Testing for Monmouth County Residents ONLY

Check with your own state health department to see if it tests ticks
Search State Health Departments
The Centers for Disease Control (CDC) offers the ability to search one or more state health departments for specific keywords or terms. Search terms are referenced against each of the state agencies checked on the search form. Results are returned ordered by state. http://www.cdc.gov/nchs/nvss/state_health_departments.htm (By clicking, you are leaving the LDA site and entering the CDC website)



College Students with Disabilities

http://weconnectnow.wordpress.com/

The We Connect Now website was created to serve college students with disabilities.

One of the goals of this site is to help college students with disabilities to succeed in their studies by getting the information and support they need, both through resources, links, blogs latest news, studying existing laws and regulation and through personal contacts.

People can share and read other people’s stories as a source of support and comfort, and take action by writing blogs, hosting an event or becoming involved in politics by knowing about upcoming legislation.

Through the jobs section, people with disabilities can get help with employment through job posting and job searching tips.

Founded in 2008.




Top 10 LDA Resources To Deal With Ticks

We are constantly trying to provide products and services to help raise awareness.  Please take a few minutes and review what the LDA’s top picks on its website have been over the years.

 Click on pictures for links to web pages.

TickLES (Kids’ 14 min prevention video)
Order Free Brochures (limited to 200)
       
  Other Tick-Borne Diseases (co-infections) Dr. Referral (connect to Lyme-literate doctors nationally)
       
  How A Tick Can Make You Sick (prevention PowerPoint geared to kids, schools & scouts)    Lyme Disease Case Maps (where & how much US Lyme)
       
  Medical Photos (ticks, rashes and microscropic images)    How to Remove a Tick & Prevention
       
  Public Service Announcements (free PSAs for your own use)   LDA Printable Materials

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 




Columbia Lyme and Tick-Borne Diseases Research Center

 

Visit New Website:  http://www.columbia-lyme.org/

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 over 5 years to funding the endowment for the Center. People nationwide contributed to make this effort a success.

The Lyme and Tick-Borne Diseases Research Center will use the vast resources of Columbia University in New York 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.

The clinical and research mission includes studies of new diagnostic tests, clinical phenomenology, immunopathogenesis, co-infections, genetic markers of vulnerability, functional and structural brain imaging, neuoropathology of post-mortem brains, and well-controlled studies of new treatments. This Center, the first such facility in the world devoted to chronic Lyme disease, 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.




National Pesticide Information Center

Funded through a cooperative agreement between Oregon State University and the Environmental Protection Agency. It is staffed by knowledgeable scientists (multi lingual) 7 days/week 6:30am-4:30pm PST to serve as factual unbiased providers of information on pesticide chemistry, toxicology, and environmental fate to all who call.  

(800) 858 7378  

E-mail us: npic@ace.orst.edu   

www.npic.orst.edu    or Spanish   www.npic.orst.edu/es

Free brochures available.

National Pesticide Information Center
Oregon State University
333 Weniger Hall
Corvallis, OR 97331-6502