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California · Nonprofit

LYMEDISEASEORG

LYMEDISEASEORG (California) receives grants from 38 organizations whose IRS filings report $1,192,266 to it, the largest being Bruce Lindorf Memorial Foundation ($314,229). 20 of them have funded it in more than one year.

Revenue FY2024
$569k
Funders on record
38
Grants received
$1.2M
Net assets
$1.6M
20/38 repeat funderspeak grant-dependency 57%
01What it does

What Lymediseaseorg does

Mission

Lymedisease.org (formerly calda) advocates nationwide to make the patient voice stroner, to support patient-centered research, to create legislative change, and to create a future where lyme patients can receive the treatments they need to get well.

As stated on its FY2024 Form 990.

Programs

  1. Education - we are the largest and most trusted communications network for lyme disease in the nation. The organization raises the level of public awareness of lyme disease through our published blogs and the digital lyme times as well as the internet, and social media.

    $216,586 spent
    38% of program spending
  2. Research - we conduct and publish research through one of the largest studies of lyme disease through our patient registry and research platform,mylymedata, with over 13,000 patients enrolled to date. We cololaborate with researchers from the university of washington and from ucla, as well as bay arealyme foundationbiobank on a tissue speciment biorepository.

    $205,187 spent
    36% of program spending
  3. Advocacy - we strive for patient involvement at all levels of decision making. We represent hundreds of thousands of patientsand provide them with the tools essential to empowerment. For over 10 years, we have been involvedin patient-led big data research efforts, conducting large scale patient surveys that engage thousands of patients and are published in peer reviewed journals.

    $96,893 spent
    17% of program spending
  4. Admin services

    $51,296 spent
    9% of program spending

The 4 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $569,962.

02The organization over time

The organization over time

Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended.

100 = 20172017 Revenue 100 ($700k) Expenses 100 ($540k) Net assets 100 ($851k)2018 Revenue 90 ($627k) Expenses 118 ($638k) Net assets 100 ($855k)2019 Revenue 89 ($624k) Expenses 115 ($621k) Net assets 108 ($921k)2020 Revenue 178 ($1.2M) Expenses 104 ($559k) Net assets 195 ($1.7M)2021 Revenue 89 ($620k) Expenses 99 ($535k) Net assets 213 ($1.8M)2022 Revenue 100 ($697k) Expenses 115 ($619k) Net assets 192 ($1.6M)2023 Revenue 72 ($502k) Expenses 121 ($654k) Net assets 192 ($1.6M)2024 Revenue 81 ($569k) Expenses 126 ($682k) Net assets 185 ($1.6M)
'17'18'19'20'21'22'23'24
Revenue (81)Expenses (126)Net assets (185)

Balance sheet

Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2019 to 2020, from $928k to $1.7M (+80%).

$877k
$886k
$928k
$1.7M
$1.8M
$1.7M
$1.6M
$1.6M
'17'18'19'20'21'22'23'24
Total assetsTotal liabilities

How it's funded, over time

Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.

2017
2018
2019
2020
2021
2022
2023
2024
ContributionsProgram revenueInvestmentOther

Surplus & reserves

Operating surplus or deficit each year, and months of liquidity in hand. 3 of the last 8 reported years ran a deficit.

$160k
’17
−$11k
’18
$3k
’19
$685k
’20
$85k
’21
$78k
’22
−$152k
’23
−$113k
’24
3.2
months of
reserve

Leadership and staff

The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.

Chief executive

Lorraine Johnson

CEO

Board chair

Ron Lindorf

Chairman

As listed on its FY2024 Form 990.

'17'18'19'20'21'22'23'24
Listed91010101081010
Joined·+1+0+0+0+0+2+0
No longer listed·0000200
03Who funds it

Who funds it, year by year

2017 → 2023: the base broadened from 8 funders to 16 funders, grant income rose $70k → $120k.

14 of 38 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 41% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.

From the IRS filings of LYMEDISEASEORG’s funders (the co-funder graph). Top 30 of 38 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.

How concentrated its funding is

LYMEDISEASEORG has a broad base — no single funder exceeds 26% of grant income, and it takes 3 funders to reach half.

the vertical line marks half of all grant income — 3 funders to its left

60% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund LYMEDISEASEORG.

26%
largest funder
54%
top three
~8
effective funders

Largest funder’s share by year: 2017 43% · 2018 45% · 2019 46% · 2020 19% · 2021 38% · 2022 41% · 2023 27% — diversifying over time.

“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.

How long its funders stay

38% of LYMEDISEASEORG's funders are still giving 3 years after their first grant; 53% give in more than one year at all.

first grant+1y+2y+3y+4y+5y+6y

Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.

Where its funders are

LYMEDISEASEORG draws 63% of its grant income from funders outside California, across 13 states in all.

MN
IL
PA
NJ
CT
CA
UT
DE
AZ
OK
GA
TX
FL

In-state vs out-of-state, by year

’17
’18
’19
’20
’21
’22
’23
California out of state home

Funder states come from each funder’s own filing. $493k arriving through sponsors registered in 12 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.

04Its place in the field

Organizations like LYMEDISEASEORG

Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.

In California

Nationally

05Profile & governance

Read directly from this organization’s own Form 990, as neutral context.

Where the money goes

84% of spending goes to programs.

Program 84%Management 14%Fundraising 3%

Governance

8
board members
100%
independent
✓Conflict-of-interest policy–Whistleblower policy✓Document retention✓Board reviewed the 990–Audited financials

Public support

55%

Share of support from the public (Schedule A) — the basis for its public-charity status.

Footprint & structure

Files a return copy in 1 state

CA

Screen this organization

A dated, signed PDF of the compliance screen for LYMEDISEASEORG: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.

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Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf

Questions and answers

Who funds LYMEDISEASEORG?
LYMEDISEASEORG (California) receives grants from 38 organizations whose IRS filings report $1,192,266 to it, the largest being Bruce Lindorf Memorial Foundation ($314,229). 20 of them have funded it in more than one year.
How many funders does LYMEDISEASEORG have?
IRS filings report 38 organizations giving $1,192,266 in grants to LYMEDISEASEORG, 20 of which have funded it in more than one year.
Who is the largest funder of LYMEDISEASEORG?
Bruce Lindorf Memorial Foundation is the largest funder on record, with $314,229 in grants. The full list of funders is on this page.
How can an organization like LYMEDISEASEORG find more funders?
Start with the funders already giving here, then look at the foundations that back similar organizations in California. The funding by cause and by state pages list the largest funders for a given area and how to approach them.

Play a game about who funds Lymediseaseorg →

These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2024 (financials across 2017–2024), and the filings of 38 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing