Lymedisease Org
Public records show a registered, tax-exempt organization in good standing.
What it says it does
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.
- Income
- $569,401
- Spending
- $682,298
- Spent on programs
- 84%
- Reserves
- 27.6 months of spending
- Largest source of income
- donations and private grants, 73%
- Employees
- 2
- Volunteers
- 15
- Highest pay
- $112,857, ceo
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Good: 85 out of 100.
Reserves
35 of 35Spendable reserves would cover 27.6 months of spending.
Debt
20 of 20It owes 1% of what it owns.
Living within its means
0 of 15Spending exceeded income by 20% of income.
Income trend
15 of 15Income rose 13% on the year before.
Spending floor
15 of 1584% of spending went to programs and raising each dollar of donations cost 4 cents.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Good: 83 out of 100.
Independent board
25 of 258 of 8 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
0 of 8Reports no written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
6 of 15Its accounts were not audited or reviewed by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (4)
- $216,586 spent. 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.
- $205,187 spent. 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.
- $96,893 spent. 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.
- $51,296 spent. ADMIN SERVICES
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated September 30, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated September 10, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2024.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since March 1996.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 7, 2026.
Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.