SILVER2022

Global Lyme Alliance, Inc.

Stamford, CT   |  www.globallymealliance.org

Mission

Our Mission: Cure Lyme and other tick-borne diseases through innovative research, awareness, and empowering the patient voice. Our Vision: A world free of Lyme and other tick-borne diseases.

Ruling year info

1999

CEO

Mrs. Laura MacNeill

Main address

1290 East Main Street 3rd Floor

Stamford, CT 06902 USA

Show more contact info

Formerly known as

Time for Lyme

Greenwich Lyme Disease Task Force

Lyme Research Alliance, Inc.

EIN

06-1559393

NTEE code info

Specifically Named Diseases Research (H80)

Fund Raising and/or Fund Distribution (T12)

Specifically Named Diseases (G80)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Lyme disease is a public health crisis. There are an estimated 427,000 new cases of Lyme in the U.S. each year, with an estimated two million people suffering from post-treatment Lyme disease by the end of 2020. Compound this with the cases of all tick-borne disease, we have reached pandemic proportions. Even when diagnosed and treated early, up to 20% of patients remain ill. GLA is focused to find answers through science that will provide accurate diagnostics and effective treatment options.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Medical Research Grants

National grant-making program funds cutting-edge research into the prevention, diagnosis and treatment of Lyme disease.

Population(s) Served
Adults

Fund programs to create awareness and better educate the public about Lyme and other tick-borne diseases.

Population(s) Served
Adults

Where we work

Awards

Light a Fire 2008

Moffley Publications

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of mentees being supported by Mentors

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Education and Awareness Programs

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We offer a peer-to-peer mentoring program for patients seeking counsel from peer patients

Number of mentors as part of our peer-to-peer mentoring program

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Education and Awareness Programs

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We engage with mentors to help provide peer-to-peer patient mentoring

Number of Ambassadors helping educate local communities

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Education and Awareness Programs

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We have an Ambassador program that helps GLA message it's mission and provide educational information to their local communities

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our Mission: Cure Lyme and other tick-borne diseases through innovative research, awareness, and
empowering the patient voice.

Our Vision: A world free of Lyme and other tick-borne diseases.

GLA RESEARCH PROGRAM OVERVIEW

• We have funded nearly 50 scientists from academia and biotech companies.

• GLA-funded researchers have published more than 150 articles in over 70 scientific and medical peer-reviewed journals. These publications create ripples of change throughout the scientific community and propel vector-borne disease research forward

Understanding of the knowledge needs in medical research into Lyme disease
Familiar with the work of each leading scientist and research center making advances to scientific understanding of tick borne diseases
Highly qualified scientific review board including a Nobel prize winner
Capability to raise significant funds through private donors, corporate support and high-profile events

TRANSFORMATIVE DISCOVERIES RESULTING FROM GLA FUNDING
2015
Microbiology/Persistence: Kim Lewis, PhD (Distinguished Professor, Northeastern University) reported that Borrelia burgdorferi can tolerate exposure to certain antibiotics. Similar studies conducted by another GLA-backed researcher at Johns Hopkins University demonstrated that although the Lyme bacteria was tolerant of exposure to antibiotics, they were sensitive to and killed by certain herbal essential oils. This research lent support to the idea that persistence of bacteria might explain why some patients suffer from chronic symptoms of Lyme disease even after being treated.


2016
Innovative Diagnostics: GLA hosted a groundbreaking conference that brought together experts from the NIH, CDC, FDA, and academic researchers from around the country to discuss Diagnostic Tests for Lyme Disease. Their extensive discussions resulted in two foundational publications: One explained that the widely used FDA-approved, CDC two-tiered test for Lyme disease diagnosis was suboptimal and that new tests needed to be developed. The second argued the need for direct diagnostic testing of early Lyme patients. As a result, academic researchers as well as biotech and pharmaceutical companies have begun development of a new generation of Lyme diagnostics tests.

2017
Clinical Studies: Post-treatment Lyme disease (PTLD) represents a subset of patients who remain ill following standard antibiotic therapy. As part of the SLICE study, Dr. Aucott was the first to use physical exam and clinical laboratory testing coupled with standardized symptom questionnaires to identify and characterize this unique and growing patient population. Dr. Aucott’s work has profoundly advanced our understanding of persistent Lyme disease by clearly defining the clinical features of PTLD patients.
2018
Neurological Lyme disease: Brian Fallon, MD (Director, Columbia University Lyme and Tick-borne Disease Research Center) collaborated with Michael Benros, MD (Head, Biological and Precision Psychiatry at Mental Health Centre Copenhagen, Denmark) and published a groundbreaking study of >12,000 Lyme disease patients in whom rates of mental and affective disorders, suicide attempts, and suicide were significantly higher than patients without Lyme.

2019
Clinical Studies: Accumulating Numbers of PTLD Cases: Despite the negative impact of PTLD on an individual’s quality of life, no systematic attempt to calculate the number of these patients had ever been undertaken. To better understand the scope of the problem, GLA teamed up with Brown University to use mathematical models to estimate the PTLD population to be as many as ~two million patients by the end of 2020.

2021
Microbiology Persistence: Monica Embers, PhD (National Primate Research Center, Tulane University) found Lyme bacteria in post-mortem brain tissue of a chronic, neurological Lyme patient who was treated with antibiotics.
Please visit: GLA.org for more information.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Global Lyme Alliance, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Global Lyme Alliance, Inc.

Board of directors
as of 12/23/2022
SOURCE: Self-reported by organization
Board chair

Mr. Paul Ross

Dana McAvity

Janet Vaccaro

Charles Balducci

Henry Dosch

Staci Grodin

Diane Blanchard

David Gerstner

Brett Kristoff

Robert Kobre

Lewis Leone

Steve Martin

Lorrie Nadel

Ed O'Connell

Karen Peetz

Paul Ross

Norma Russo

Debbie Siciliano

David Nolan

Peter Norley

Alexander Tisch

Nancy Del Genio

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No