Lymedisease Org
- Assets
- $1.8m
- Revenue
- $619.8k
- Investments
- $0.0
- Employees
- 2
- Location
- San Ramon, CA
- Founding
- 03/1996
- Data as of
- 12/2021
- EIN
- 68-0214101
Organization Overview
Lymedisease Org is located in San Ramon, 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 12/2021, 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 12/2021, Lymedisease Org generated $619.8k in total revenue. This represents relatively stable growth, over the past 7 years the organization has increased revenue by an average of 4.4% each year. All expenses for the organization totaled $534.6k during the year ending 12/2021. While expenses have increased by 3.7% per year over the past 7 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.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2021
Describe the Organization's Mission:
Part 3 - Line 1
LYMEDISEASE.ORG (FORMERLY CALDA) ADVOCATES NATIONWIDE TO MAKE THE PATIENT VOICE STRONGER, 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.
RESEARCH- WE CONDUCT AND PUBLISH RESEARCH THROUGH ONE OF THE LARGEST STUDY OF LYME DISEASE THROUGH OUR PATIENT REGISTRY AND RESEARCH PLATFORM, MYLYMEDATA, WITH OVER 13,000 PATIENTS ENROLLED TO DATE. WE COLLABORATE WITH RESEARCHERS FROM THE UNIVERSITY OF WASHINGTON AND FROM UCLA, AS WELL AS BAY AREA LYME FOUNDATION BIOBANK ON A TISSUE SPECIMEN BIOREPOSITORY.
ADVOCACY- WE STRIVE FOR PATIENT INVOLVEMENT AT ALL LEVELS OF DECISION MAKING. WE REPRESENT HUNDREDS OF THOUSANDS OF PATIENTS AND PROVIDE THEM WITH THE TOOLS ESSENTIAL TO EMPOWERMENT. FOR OVER 10 YEARS, WE HAVE BEEN INVOLVED IN 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) | Role | Hours | Compensation |
|---|---|---|---|
Lorraine Johnson CEO | Officer | 60 | $92,157 |
Phyllis Mervine Edm President | OfficerTrustee | 1 | $0 |
Barbara Barsocchini VP & Secretary | OfficerTrustee | 18 | $0 |
Ron Lindorf Chair | OfficerTrustee | 3 | $0 |
Dorothy Kupcha Leland Vice President | OfficerTrustee | 40 | $0 |
Mitchell Hoggard Treasurer | OfficerTrustee | 3 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $198,371 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $356,461 |
| Noncash contributions included in lines 1a–1f | $20,316 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $554,832 |
| Total Program Service Revenue | $0 |
| Investment income | $64,985 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $619,817 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $0 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $92,157 |
| Compensation of current officers, directors, key employees. | $13,824 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $172,142 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $13,743 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $34,275 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $3,358 |
| Advertising and promotion | $0 |
| Office expenses | $8,700 |
| Information technology | $51,160 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $459 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $50,242 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $3,712 |
| All other expenses | $150 |
| Total functional expenses | $534,560 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $166,887 |
| Savings and temporary cash investments | $1,649,498 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $0 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $1,816,385 |
| Accounts payable and accrued expenses | $3,888 |
| Grants payable | $0 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $0 |
| Total liabilities | $3,888 |
| Net assets without donor restrictions | $0 |
| Net assets with donor restrictions | $0 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $1,812,497 |
| Total liabilities and net assets/fund balances | $1,816,385 |
Grants Recieved
Over the last fiscal year, we have identified 5 grants that Lymedisease Org has recieved totaling $208,322.
| Awarding Organization | Amount |
|---|---|
Morgan Stanley Global Impact Funding Trust Inc Indianapolis, IN PURPOSE: UNRESTRICTED GENERAL SUPPORT | $100,000 |
Bay Area Lyme Major Gift Fund Portola Valley, CA PURPOSE: MYLYMEDATA PROJECT | $100,000 |
Schwab Charitable Fund San Francisco, CA PURPOSE: HEALTH | $5,328 |
Amazonsmile Foundation Seattle, WA PURPOSE: GENERAL SUPPORT | $1,994 |
The Bmj Charitable Foundation Newport Beach, CA PURPOSE: TO HELP ADVOCATE FOR CHANGE, RAISE AWARENESS AND FUND RESEARCH THAT CAN IMPROVE PATIENTS LIVES LIVING WITH LYME DISEASE. | $1,000 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Hemostasis And Thrombosis Center Of Nevada Las Vegas, NV | $8,050,475 | $23,289,804 |
Fritz B Burns Foundation Woodland Hills, CA | $180,854,841 | $52,854,889 |
Central Valley Recovery Services Inc Visalia, CA | $3,599,081 | $4,507,938 |
Foundation For Prader Willi Research Walnut, CA | $6,744,610 | $3,838,959 |
Taking Control Of Your Diabetes Solana Beach, CA | $2,888,686 | $2,832,970 |
Create Cures Foundation Santa Monica, CA | $2,110,360 | $1,248,713 |
Lyme Disease Biobank Foundation Portland, OR | $99,221 | $737,856 |
Diabetes Technology Society Burlingame, CA | $1,434,867 | $1,063,604 |
Lgs Foundation San Diego, CA | $1,489,428 | $785,563 |
Kern County Hispanic Commission On Alcohol And Drug Abuse Services Bakersfield, CA | $100,045 | $666,769 |
Lymedisease Org San Ramon, CA | $1,816,385 | $619,817 |
Brian Grant Foundation Portland, OR | $885,481 | $441,444 |