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LymeAid 4 Kids Provided $419,400 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

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In 2021, 19 applicants were awarded grants for a total of $19,000

1 Arizona
1 Illinois
1 Massachusetts
1 Minnesota
4 Missouri
1 New Hampshire
2 New Jersey
4 New York
1 Ohio
2 Pennsylvania
1 Rhode Island

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




ILADS is Hosting Lyme Caregiver Webinar

Author & Advocate, Nicole D. Bell

The International Lyme and Associated Diseases Society (ILADS) will be hosting a patient education webinar, Lyme Caregiving – Providing Care without Losing Yourself, presented by Nicole D. Bell on Tuesday, February 15, 2022, 8 PM ET. 

“Nicole Bell is an author, entrepreneur, and advocate for tick-borne and neurodegenerative diseases. She advanced her professional career as an engineer and program manager and spent the past 15 years in medical devices and medical technology. She became an executive in a fast-growing medical device company, where she built a world-class team in surgical robotics. But when her husband became chronically ill, she took on her most challenging roles yet: caregiver and medical proxy. Her memoir, What Lurks in the Woods, details the harrowing experience and seeks to help others navigating chronic conditions.”

In this webinar, Nicole will share her story along with the lessons learned and the tools that helped her survive. 

The webinar is for both patients and caretakers and will be recorded and made available to all registered attendees. Q&A will follow the virtual Zoom presentation. Registration fee to attend this event is $25. 

Register for this ILADS event here

Find more resources on ILADS website here

For more information on Nicole Bell and her Memoir, What Lurks in the Woods, click here

Find additional LDA articles on patient and caretaker support here




Gulf Coasts Ticks Infected with Rickettsia parkerii Established in NYC

Gulf Coast ticks. Engorged female, adult female, adult male. Photo: James Occi, (PhD cand.) LDA Scientific & Professional Advisory BoardIn a recent New York City (NYC) study, researchers investigated habitat associations and pathogen status of Gulf coast ticks (Amblyomma maculatum). NYC is a newly expanded distribution range for this species.

Investigators collected 88 ticks from two parks on Staten Island (NYC) and compared findings of ticks collected from similar habitats in Brooklyn from April 30–September 1. They then tested 77 ticks for pathogens.

Gulf coast tick collections from Freshkills and Brookfield parks on Staten Island, NYC, included both adult and immature ticks. Ticks were found in both native and invasive grass habitats. No Gulf coast ticks were collected in Brooklyn. Of the ticks tested, 52.6% were found to be infected with Rickettsia parkeri—the etiological agent of R. parkeri rickettsiosis.

Researchers caution that this high rate of infection in such a densely populated urban center is a concern to public health and that the medical community needs to be aware of both the presence of this vector as well as the symptoms associated with R. parkerii infections.

Access to the full text article can be found here

Other LDA articles on Gulf coast ticks can be found here

 




Babesiosis: A Global Review

This review summarizes the health burden of human babesiosis emerging on a global scale. Authors discuss tools used to monitor the frequency and location of disease as well as demographics, modes of transmission and the location of human babesiosis. Authors further describe the causative Babesia spp. in North and South America, Europe, Asia, Africa, and Australia and present the primary symptomology and clinical features associated with infections.

The disease burden of human babesiosis is especially impactful on immunocompromised patients and the elderly population. Authors state that case numbers are greatly underestimated and are likely to increase, and they suggest that there is a need for improved surveillance, development of new antibiotics, supportive therapies, and a vaccine to limit the impact of the disease worldwide. 

Read full text article here

Read additional LDA articles on Babesia here




New Guidelines Published by The Wilderness Medical Society

A recent article published by The Wilderness Medical Society describes evidence-based guidelines for the prevention and management of tick-borne illness. These guidelines were developed on a grade system by an expert panel designated by The Wilderness Medical Society. Panelists were selected based on level of clinical interest or research experience. Evidence for each recommendation was collected by searching peer reviewed articles identified through searching PubMed and Google Scholar databases. Additional articles were reviewed  manually by searching the references section of the acquired articles, reviewing existing practice guidelines, as well as review of CDC references.

Tick-borne illnesses that were discussed in these guidelines include:  Diseases caused by Borrelia spp. (Lyme disease), Anaplasmosis, Ehrlichiosis, Tick-borne Relapsing Fever, Rocky Mountain Spotted Fever, Tularemia, Babesiosis, Colorado Tick Fever, Powassan virus, and Alpha-gal syndrome. 

The Panel proposed recommendations based on the quality of supporting evidence according to criteria established by the American College of Chest Physicians (ACCP) classification scheme for grading evidence and recommendations. Where the ACCP scheme did not adequately describe recommendations, recommendations that were not supported by data but based on reasonable clinical practice, were classified as “expert opinion.”

Authors reviewed clinical presentation, epidemiology, prevention, and management of tick-borne illness in the United States, focusing primarily on interventions appropriate for restricted environments. A summary of guideline recommendations are provided below.

Strong Recommendations:

  • Skin repellents including DEET, picaridin, and permethrin
  • Tick checks 
  • Washing and drying clothing at high temperatures
  • Mechanical tick removal within 36 hours of attachment For treatment,
  • Single-dose doxycycline for high-risk Lyme disease exposures were recommended versus “watchful waiting”
  • Evacuation from backcountry settings for symptomatic tick exposures
  • Education programs focused on tick-borne illnesses

Weak Recommendations: 

  • Use of light-colored clothing
  • Insect repellents other than DEET, picaridin, and permethrin
  • Showering after exposure to tick habitat Weak recommendations are also provided against
  • Passive methods of tick removal, including the use of systemic and local treatments

Evidence was insufficient to support the use of long-sleeved clothing and the avoidance of tick habitat such as long grasses and leaf litter. And although evidence supporting Lyme disease vaccination was present, the vaccine is not available in the US and therefore was not provided a grade. 

Read full text article here

Read additional LDA articles on prevention here

 




New Tool from Johns Hopkins: Lyme & TBD Dashboard

In a recent article, Johns Hopkins presents its newly developed tool, the Lyme and Tickborne Disease (TBD) Dashboard which tracks tickborne diseases at a global scale and displays maps and spatial data sets utilizing unique geographic context and  includes a search function to find out what the incidence is in your US county.

This initiative was led by the Johns Hopkins Spatial Science for Public Health Center, in collaboration with the Johns Hopkins Medicine Lyme Disease Research Center and the Johns Hopkins Lyme and Tickborne Diseases Research and Education Institute. 

The dashboard was primarily designed for researchers. However, this tool is both accessible and useful for use in the public health sector, policymakers, advocacy groups, and the general public. 

The article describes how this novel tool can be used to raise awareness of TBDs and encourage both research and collaboration in science representing a One Health approach. Authors describe the experience of Johns Hopkins developers in designing and implementing the dashboard modeled after their COVID-19 dashboard and the main features of the Lyme & TBD dashboard. The article also presents discussion of the current limitations and future directions of this tool.

Read the full article here

View the Johns Hopkins Lyme & TBD Dashboard here

Read additional LDA articles on Lyme & TBD distribution here




Lyme & Other TBD Treatment in Pregnancy: New guidance

In a recently published review article,* authors provide a comprehensive summary of treatment options for pregnant patients with less common bacterial, fungal, and viral infections, including several tick-borne diseases (Lyme disease, ehrlichiosis, human granulocytic anaplasmosis, human monocytic ehrlichiosis, babesiosis, and Rocky Mountain spotted fever). This review provides guidance to clinicians based on the most recently published evidence-based research and expert recommendations.

The review  included a search of MEDLINE (inception to March 2021); clinical practice guidelines (both national and international); the CDC website; and additional references from bibliographies of noteworthy articles. The review also provides a list of medications on the WHO Essential Medications List that are used to treat the above infections (*Alyssa P. Gould et al., Drugs in Context-peer reviewed).

NOTE:  The information presented is for informational purposes only. The LDA does not give medical or legal advice. Any information on the site should not be used to take the place of advice from your personal physician or from any other professional. Any health care or legal information on the website is attributed to the professional(s) who wrote the information and is not necessarily endorsed by the Lyme Disease Association. Links to other sites are provided for ease of research, and information on those sites is the opinion of those who publish the sites and is not necessarily that of the LDA. The LDA does not endorse professionals, products or services.

 

A summary of key treatment recommendations from the review article for several tick-borne diseases during pregnancy are as follows:

Lyme disease:
  • Treatment of gestational Lyme disease is essential to reduce adverse outcomes in pregnancy. The data shows adverse outcomes in treated pregnancy is (11–16%) compared to untreated disease (50–60%).
  • Doxycycline should not routinely be used in pregnancy for Lyme disease in order to avoid adverse side effects including transient suppression of bone growth and staining of developing teeth, especially with proven alternatives.
  • Amoxicillin is the preferred treatment in the absence of neurological manifestations or atrioventricular heart block. 
  • Ceftriaxone is typically reserved for patients with severe neurological or cardiac manifestations. 
  • One study noted a non-significant increase in adverse pregnancy outcomes, such as pregnancy loss, among orally treated (31.6%) compared to parenterally treated (12.1%) pregnant patients.
  • Alternative oral therapy is cefuroxime axetil and parenteral therapies include penicillin G or cefotaxime.
  • Late Lyme disease (often manifesting as Lyme arthritis) may be managed with oral or parenteral β-lactams. 
Ehrlichiosis & Anaplasmosis:
  • If infections with anaplasmosis or ehrlichiosis is suspected, treatment should be initiated due to the likelihood of complications and potential for vertical transmission of disease. 
  • Rifampin has shown in vitro activity against ehrlichia and has been used successfully in limited case reports of pregnant women with anaplasmosis.
  • Doxycycline has been used successfully to treat ehrlichiosis.
  • Due to a lack of data, these pregnant patients should be closely monitored for resolution of disease.
  • The addition of amoxicillin or cefuroxime is suggested if coinfection with Lyme disease is suspected, as rifampin does not have activity against B. burgdorferi.
Babesiosis:
  • Patients with suspected babesiosis should be treated due to potential complications, including possible vertical transmission to the fetus.
  • Combination therapy is preferred with clindamycin plus quinine. 
  • Longer treatment courses or retreatment may be needed in cases with symptoms and/or parasitaemia persisting >3 months. Resolution of parasitaemia should be used to determine treatment course.
Rocky Mountain spotted fever (RMSF):
  • RMSF cases are associated with poor outcomes for the fetus, regardless of the treatment.
  • Prevention is crucial for pregnant patients, and treatment should be provided within 3–5 days of exposure.
  • Doxycycline is the preferred therapy. Treatment course is typically 5–7 days or 3 days after fever resolution.
  • Chloramphenicol is a proposed alternative treatment; but there are concerns for significant adverse effects, including myelosuppression, aplastic anaemia, and grey baby syndrome, specifically at or near birth, and it is associated with higher mortality in RMSF. (chloramphenicol is not available orally in the US).

Read the full review article here

Read other LDA articles regarding treatment here




Launch of Columbia’s Cohen Center for Health and Recovery from Tick-Borne Diseases

Cohen Center for Health and Recovery from Tick-Borne Diseases
Dr. Brian Fallon

A group of Columbia physicians, led by Brian Fallon MD, MPH, Professor of Psychiatry at Columbia University Irving Medical Center and the director of Columbia’s Lyme and Tick-Borne Diseases Research Center, continues with plans to dramatically expand their efforts in combating the growing threat of Lyme & TBD to public health in the US. Thanks to a $16 million gift from the Steven & Alexandra Cohen Foundation, announced earlier this year, the group recently launched a new clinical program, the Cohen Center for Health and Recovery from Tick-Borne Diseases. The center, committed solely to the treatment of Lyme and similar conditions, such as anaplasmosis, babesiosis, and Rocky Mountain spotted fever, will be the first of its kind in New York City.

Columbia’s Lyme and Tick-Borne Diseases Research Center* has been conducting critical research as well as specializing in treatment of the most complex cases. Cohen Center for Health and Recovery from Tick-Borne Diseases will provide clinical services to patients in all stages of disease, with a focus on helping those who suffer from chronic health complications that are likely the result of infections contracted months or even years prior.        *(The Research Center was established in 2008 by the Lyme Disease Association Inc. and Time for Lyme [GLA]).

Dr. Fallon had this to say, “Tick-borne illnesses have long been shrouded in mystery, with scientists disagreeing on some of the most fundamental questions about how they affect the body, especially over the long term, … But there’s been a tremendous amount of scientific progress made in the past few years, and I think we’re finally ready to start translating that knowledge into safer, more effective treatments.”


NOTE from LDA President Pat Smith posted on March 30 about the announcement of the Cohen gift: “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. ”

Read coverage of this story in Columbia Magazine.

Read more about the Columbia University & Steven & Alexandra Cohen Foundation Partnership.




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!