Lymedisease Org

Organization Overview

Lymedisease Org is located in San Diego, CA. The organization was established in 1996. According to its NTEE Classification (G80) the organization is classified as: Specifically Named Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2023, Lymedisease Org employed 2 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Lymedisease Org is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 12/2023, Lymedisease Org generated $501.9k in total revenue. This represents relatively stable growth, over the past 9 years the organization has increased revenue by an average of 1.0% each year. All expenses for the organization totaled $653.9k during the year ending 12/2023. While expenses have increased by 5.2% per year over the past 9 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2023

Describe the Organization's Mission:

Part 3 - Line 1

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.

Describe the Organization's Program Activity:

Part 3 - Line 4a

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.


ADMIN SERVICES


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.


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.


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Board, Officers & Key Employees

Name (title)Compensation
Lorraine Johnson
CEO
$107,588
Barbara Barsocchini
Board Member
$0
Carolyn Degnan
Secretary, C
$0
Christine Green
Director
$0
Mitchell Hoggard
Treasurer
$0
Erica Lehman
Director
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$148,999
Fundraising events$0
Related organizations$0
Government grants $0
All other contributions, gifts, grants, and similar amounts not included above$283,484
Noncash contributions included in lines 1a–1f $0
Total Revenue from Contributions, Gifts, Grants & Similar$432,483
Total Program Service Revenue$0
Investment income $50,447
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $19,017
Net Income from Fundraising Events $0
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $501,947

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