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PROJECT LYME
NEW YORK, NY · EIN 811138289 · Form 990 · FY2024 · NTEE G80 · Voluntary Health Associations · Small ($100K-$1M)
revenue
$546K
expenses
$5.1M
net assets
$908K
employees
1
volunteers
30
program ratio
11%
mission · from form 990

PROJECT LYME'S MISSION IS TO ERADICATE THE EPIDEMIC OF LYME DISEASE AND OTHER TICK-BORNE ILLNESSES BY SPREADING AWARENESS, PROVIDING EDUCATIONAL RESOURCES, FUNDING PEER-REVIEWED RESEARCH, AND SUPPORTING ADVOCACY FOR SOLUTIONS TO END THE SUFFERING. SINCE 2016, PROJECT LYME HAS CHALLENGED MISINFORMATION ABOUT DIAGNOSIS AND TREATMENT, ADVOCATED FOR PATIENTS' RIGHTS, AND BUILT A COMMUNITY FOR LYME PATIENTS AS WELL AS THEIR LOVED ONES.

profile · synthesized from sources

Project Lyme is a nonprofit organization dedicated to eradicating Lyme and other tick-borne diseases through education, advocacy, and research funding. Since 2016, it has worked to correct misinformation, support patient rights, and build community for patients and families. The organization raises awareness through media, public campaigns, educational events, and financial support for research into improved diagnostics and treatments.

irs program accomplishments · form 990 part iii · fy2024

What they reported doing

  1. #1 primary $219K
    EDUCATION AND AWARENESS - EDUCATION, AWARENESS, AND ADVOCACY ARE PROJECT LYME'S THREE LARGEST INITIATIVES FROM AN EMPLOYMENT AND PUBLIC ENGAGEMENT STANDPOINT. THESE FUNDS ARE SPLIT BETWEEN FUNDING THE DISTRIBUTION OF DOCUMENTARY FILM THE QUIET EPIDEMIC, CREATING SOCIAL MEDIA AND WEBSITE CONTENT FOR @PROJECTLYME AND PROJECTLYME.ORG, CREATING AND DISTRIBUTING PUBLIC SERVICE ANNOUNCEMENTS, AS WELL AS SPONSORING ONLINE AND IN-PERSON EDUCATIONAL SEMINARS AND ADVOCACY EVENTS. WE DISTRIBUTED $45,000 TO THE QUIET EPIDEMIC, $5,250 TO INTERNATIONAL LYME AND ASSOCIATED DISEASES (ILADS), $4,997 TO DRTALKS, $1,338 TO ILLINOIS LYME ASSOCIATION, $1,000 TO INTEGRATED PEST MANAGEMENT (IPM) LYME LIGHT FOUNDATION, $500 TO ILADS AND OTHER MINOR GRANTS TO ORGANIZATIONS WORKING IN EDUCATION AND AWARENESS.
named programs · 4 · from sources

What they call their work

Advocacy and Community Building
Organizes online and in-person seminars and events to advocate for patient rights, challenge misinformation, and build support networks for patients and families.
Documentary Sponsorship
Funds and distributes documentary films such as "The Quiet Epidemic" and supports productions like "Everybody Knows" to raise public awareness about the Lyme disease crisis.
Education and Awareness
Produces and distributes content via social media, website, public service announcements, and documentaries to increase public understanding of Lyme disease prevention, diagnosis, and treatment.
Research Funding
Supports peer-reviewed research through grants focused on improving diagnostics and therapeutics for Lyme and tick-borne illnesses, primarily via partnership with Bay Area Lyme Foundation.
activities · 8 groups

What they do

  • Healthcare Policy Advocacy 1 activity
    • Advocate for increased federal funding and policy change
      Shares patient stories and organizes public events—including press conferences with Senator Kirsten Gillibrand and wellness gatherings—to influence policy. Advocacy efforts have contributed to a $282 million increase in federal funding for tick-borne disease research since 2019.
  • Disease-Specific Clinical & Patient Education 1 activity
    • Develop and distribute educational content on Lyme disease
      Creates and shares accessible educational materials about Lyme and tick-borne diseases, including a 38-point symptom checklist, brochures, newsletters, social media content, public service announcements, and informational libraries. Public service announcements aired 19,365 times across 64 TV stations in 30 states.
  • Charitable Grantmaking to Specific Causes 1 activity
    • Fund advocacy and awareness organizations
      Awards grants to support advocacy and education efforts, including $225,000 to the Founding Center For Lyme Action since 2019 and contributions to ILADS, DrTalks, Illinois Lyme Association, IPM Lyme Light Foundation, and others. Also funded production of the documentary The Quiet Epidemic with a $100,000 grant.
  • Autoimmune Disease Research Funding 1 activity
    • Fund research on Lyme disease diagnostics and therapeutics
      Provides grants totaling nearly $1.9 million to fund 19 research projects aimed at improving diagnostics and treatments for Lyme disease, including funding channeled through Bay Area Lyme Foundation and other partners. Also supports research via affiliate revenue streams and fundraising campaigns.
  • Peer-Led Mental Health Support Groups 1 activity
    • Host virtual support groups for mothers affected by Lyme disease
      Organizes bi-monthly virtual meet-ups through the Mothers Against Lyme initiative to provide peer support and connection for mothers affected by Lyme disease or raising children with Lyme disease. These support programs have served thousands of patients through hundreds of organized meet-ups.
  • Patient and Researcher Conferences 1 activity
    • Provide platforms for cross-sector collaboration
      Operates a collaborative forum connecting patients, caregivers, medical professionals, and scientists to exchange information and experiences related to tick-borne diseases.
  • Medical Professional Education & Training 1 activity
    • Sponsor scientific conferences and physician education initiatives
      Funds and sponsors national scientific conferences and educational seminars to improve medical understanding of tick-borne diseases and enhance physician training. Also hosts speaker series and webinars with thousands of attendees as part of its educational programming.
  • Uncategorized 2 activities
    • Conduct global awareness campaigns for Lyme disease
      Organizes The Lyme Disease Challenge, a global campaign generating over 100 media stories and thousands of social media posts across 45 countries and 35 languages. Partners with major landmarks to light buildings green in recognition of tick-borne disease awareness.
    • Disseminate scientific research on persistent Lyme infection
      Operates the Lyme Persists initiative to translate and share peer-reviewed findings on bacterial persistence in Lyme disease, including studies showing antibiotic treatment failure, viable spirochetes post-treatment, and efficacy of combination therapy in animal models and long-term patients.
financials · form 990 · fy2024
revenue
Total revenue$546K
Contributions & grants$678K124%
Program service revenue$00%
Investment income$13K2%
Other revenue$-145K
expenses
Total expenses$5.05M
Program expenses11%
Admin / overhead86%
Fundraising3%
Salaries & benefits$136K
Grants paid out$310K
Largest expense lineProfessional Fees
balance sheet
Total assets$908K
Cash$908K
Investments$0
Liabilities$249
Net assets$908K
Liquid reserves2.2 mo
4 years on record · 2020–2024 · YoY revenue -31.0%
leadership · form 990 part vii · fy2024

Who runs it

paid leadership · 1
NameTitleHours/wkCompensation
NOAH JOHNSTON EXECUTIVE DIRECTOR 40 $120K
board members · 11
  • ALEXANDRA MORESCO — BOARD CHAIR
  • DAVID ROTH — BOARD MEMBER
  • ISABEL ROSE — BOARD MEMBER
  • JENNIFER WEIS — BOARD MEMBER
  • KIM DICKSTEIN — SECRETARY
  • MARK WEBER — BOARD MEMBER
  • MELISSA BELL — BOARD MEMBER
  • NAN KURZMAN — BOARD MEMBER
  • NINA LEVENE — BOARD MEMBER
  • SCOTT MORESCO — TREASURER
  • SUSAN GOLDENBERG — BOARD MEMBER
relationships · 23

Who they work with

  • Bay Area Lyme Foundation Partner — Collaborates on research funding initiatives
  • Bay Area Lyme Foundation Partner — Receives grant funding from Project Lyme for research on Lyme disease diagnostics and therapeutics.
  • Bonfire Partner — Hosts a storefront where a percentage of sales supports Project Lyme research.
  • Center for Lyme Action Partner — Collaborates on organizing the upcoming Lyme Concert in September 2026.
  • Dr. Brian Fallon Partner — Lyme disease specialist in NYC who diagnosed patient Johnny and is referenced as part of the network of Lyme doctors supporting patients.
  • DrTalks Partner — Receives grant funding from Project Lyme for Lyme disease education and awareness.
  • Everybody Knows Films, LLC Partner — Received funding from Project Lyme for the production of a Lyme disease documentary.
  • Founding Center For Lyme Action Partner — Funded by Project Lyme to advocate for federal funding increases
  • Hancock Tower Partner — Partners to light building green for Lyme disease awareness
  • IPM Lyme Light Foundation Partner — Receives grant funding from Project Lyme for Lyme disease education and awareness.
  • Illinois Lyme Association Partner — Receives grant funding from Project Lyme for Lyme disease education and awareness.
  • International Lyme and Associated Diseases (ILADS) Partner — Receives grant funding from Project Lyme for education and awareness activities related to Lyme disease.
  • Isabel Rose Partner — Host of the Mothers Against Lyme virtual meet-ups, contributing personal experience and leadership as a mother and Lyme patient.
  • Johns Hopkins Partner — References studies from Johns Hopkins on promising treatment options for persister cells in Lyme disease.
  • LymeLight Foundation Partner — Partner organization co-founded by honorees Phyllis and Scott Bedford, aligned in supporting families affected by Lyme disease.
  • Mothers Against Lyme Partner — Community initiative of Project Lyme that hosts virtual support events for mothers affected by Lyme disease.
  • Mothers Against Lyme Partner — Hosts patient meet-ups supported by Project Lyme
  • Niagara Falls Park Service Partner — Partners to illuminate landmarks green for Lyme disease awareness
  • Senator Kirsten Gillibrand Partner — Co-hosted a press conference with Project Lyme to raise awareness about tick-borne diseases.
  • The Helmsley Building Partner — Partners to light building green for Lyme disease awareness
  • The Quiet Epidemic Partner — Received funding from Project Lyme for the distribution of a documentary on Lyme disease.
  • TiCK MiTT Partner — Partner organization where use of affiliate code PROJECTLYME directs 10% of order value back to Project Lyme.
  • Willis Tower Partner — Partners to light building green for Lyme disease awareness
strategies · 4

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Integrated Multi-Pillar Approach
    methodology: integrated_multi_pillar_approach
    By combining education, research, advocacy, and patient support in a coordinated model, PROJECT LYME advances solutions for Lyme disease because systemic change requires simultaneous action across awareness, science, policy, and individual empowerment.
  • Patient Empowerment Through Personalized Knowledge Access
    methodology: patient_empowerment
    By tailoring educational resources to individual needs and equipping patients with scientific evidence and diagnostic tools, PROJECT LYME enables informed self-advocacy because personalized, accessible knowledge increases engagement with providers and improves navigation of complex diagnostic challenges.
  • Peer Support as Empowerment Mechanism
    methodology: peer_support_network
    By facilitating peer-led virtual support groups and storytelling platforms, PROJECT LYME reduces isolation and builds resilience among patients because shared lived experience fosters trust, validation, and practical coping strategies that clinical channels alone cannot provide.
  • Targeted Research Investment for Diagnostic and Therapeutic Gaps
    methodology: research_investment_targeting
    By directing funding toward diagnostics and therapeutics for chronic Lyme disease, PROJECT LYME addresses critical unmet medical needs because current testing limitations and treatment inefficacy perpetuate patient suffering and systemic under-recognition.