Lgs Foundation
- Assets
- $1.3m
- Revenue
- $1.1m
- Investments
- $0.0
- Employees
- 9
- Location
- San Diego, CA
- Founding
- 08/2008
- Data as of
- 12/2023
- EIN
- 26-2051377
Organization Overview
Lgs Foundation, operating under the name Lennox-Gastaut Syndrome LGS Fd, is located in San Diego, CA. The organization was established in 2008. 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, Lennox-Gastaut Syndrome LGS Fd employed 9 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Lennox-Gastaut Syndrome LGS Fd 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, Lennox-Gastaut Syndrome LGS Fd generated $1.1m in total revenue. This organization has experienced exceptional growth, as over the past 9 years, it has increased revenue by an average of 19.6% each year . All expenses for the organization totaled $1.3m during the year ending 12/2023. While expenses have increased by 24.1% 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.
Since 2015, Lennox-Gastaut Syndrome LGS Fd has awarded 16 individual grants totaling $350,000. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2023
Describe the Organization's Mission:
Part 3 - Line 1
THE LENNOX-GASTAUT SYNDROME (LGS) FOUNDATION IS A NONPROFIT ORGANIZATION DEDICATED TO IMPROVING THE LIVES OF INDIVIDUALS IMPACTED BY LGS THROUGH ADVANCING RESEARCH, AWARENESS, EDUCATION, AND FAMILY SUPPORT.
Describe the Organization's Program Activity:
Part 3 - Line 4a
RECEIVING A DIAGNOSIS OF LGS IS OVERWHELMING AND LEAVES FAMILIES WITH MANY UNANSWERED QUESTIONS. LGSF PROVIDES PATIENT NAVIGATOR AND FAMILY AMBASSADOR SUPPORT TO ALL LIVING WITH LGS SO THAT NOBODY HAS TO WALK THE JOURNEY ALONE. WE HOST A BIENNIAL PROFESSIONAL AND FAMILY CONFERENCE DESIGNED TO UNITE THE COMMUNITY OF PATIENTS, FAMILIES, CAREGIVERS, RESEARCHERS, CLINICIANS, AND OTHER PROFESSIONALS. OUR TOTAL COMMUNITY GREW TO 12,000 MEMBERS IN 2022 WITH OUR ONLINE CAREGIVER COMMUNITY REACHING 7,200 MEMBERS. WE HAVE 51 AMBASSADORS IN 8 COUNTRIES WHO HELP LOCAL FAMILIES NAVIGATE THE LGS JOURNEY. IN 2022, 644 NEW FAMILIES WERE ONBOARDED TO OUR SUPPORT COMMUNITY. 33 ONLINE SUPPORT GROUPS WERE HOSTED, 460 NEW FAMILY WELCOME KITS WERE MAILED TO GET FAMILIES STARTED ON THEIR LGS JOURNEY, AND 485 ABOUT LGS TREATMENT KITS WERE MAILED SO THAT FAMILIES COULD UNDERSTAND THE BROAD LANDSCAPE OF LGS TREATMENTS. WE ALSO SUPPORTED APPROXIMATELY 120 BEREAVED FAMILIES WHO HAVE LOST THEIR LOVED ONES TO LGS. FURTHER, WE HAVE FUNDED OVER $100,000 IN PATIENT ASSISTANCE SINCE OUR INCEPTION. OUR FAMILY SUPPORT EFFORTS CONTINUE TO GROW AS WE FOCUS ON SUPPORTING OUR FAMILIES BOTH LOCALLY AND GLOBALLY.
IN 2023, LGSF BROUGHT TOGETHER NEARLY OVER 170 RESEARCHERS, CLINICIANS, AND LGS FAMILIES TO ADVANCE CLINICAL RESEARCH IN LGS. ATTENDEES WERE PROVIDED THE OPPORTUNITY TO COLLABORATE AND BETTER DISCUSS RESEARCH AND TREATMENT OPTIONS FOR LGS AND TO REFRESH OUR ROADMAP TOWARD THE CURES. THE MEETING WAS A HUGE SUCCESS, GROWING THE LGS COLLABORATIVE RESEARCH NETWORK AND GETTING CONSENSUS ON TWO MAIN GOALS FOR THE FUTURE: (1) ADVANCING RESEARCH IN SLEEP, BEHAVIOR, AND COMMUNICATIONS IN THOSE WITH LGS SO WE CAN MEASURE IMPROVEMENTS AND (2) GAINING CONSENSUS ON WHICH TOOLS ARE BEST IN MEASURING SEIZURES IN LGS AND ITS RELATED COMORBIDITIES.
LGSF FUNDS RESEARCH FOR BETTER TREATMENTS AND CURES FOR LGS AND LGS-RELATED EPILEPSIES BY AWARDING RESEARCH GRANTS TO QUALIFIED SCIENTISTS AND CLINICIANS. THESE GRANTS FUND INITIAL RESEARCH HYPOTHESES THAT HAVE NOT BEEN FULLY EXPLORED. THE RESULTS EXTRACTED FROM THIS TYPE OF RESEARCH WILL HELP BRING UNTESTED RESEARCH TO THE POINT THAT IT MAY QUALIFY FOR LARGER GOVERNMENTAL FUNDING. SINCE 2013, LGS HAS AWARDED NEARLY $1.7 MILLION TO 16 RESEARCH PROJECTS AND OVER 12 RESEARCH CONVENINGS. RESEARCH EFFORTS HAVE RAMPED UP TO INCREASE THIS DRAMATICALLY OVER THE NEXT 5 YEARS. RESEARCH AREAS INCLUDE DEATH IN LGS, SUDEP, UNDERSTANDING WHERE THE ELECTROGRAPHIC FEATURES OF LGS ORIGINATE IN THE BRAIN, DRUG DISCOVERY, DRUG SCREENING, TREATMENTS, GENETICS, EPIDEMIOLOGY, AND NEURAL NETWORKS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Tracy Dixon-Salazar PHD Executive Director | Officer | 60 | $133,025 |
Brittany Brown Member | Trustee | 1 | $0 |
Dale Todd Member | Trustee | 1 | $0 |
Fred Roedl Member | Trustee | 1 | $0 |
Melanie Huntley Member | Trustee | 2 | $0 |
Karen Groff Med Vice President | OfficerTrustee | 8 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $1,023,273 |
| Noncash contributions included in lines 1a–1f | $23,691 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,023,273 |
| Total Program Service Revenue | $32,846 |
| Investment income | $14,542 |
| 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 | $1,070,661 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $50,951 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $75,000 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $133,025 |
| Compensation of current officers, directors, key employees. | $13,370 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $461,064 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $2,149 |
| Payroll taxes | $48,322 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $3,348 |
| Fees for services: Accounting | $34,342 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $52,081 |
| Advertising and promotion | $103,937 |
| Office expenses | $21,890 |
| Information technology | $38,983 |
| Royalties | $0 |
| Occupancy | $1,614 |
| Travel | $29,805 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $184,053 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $12,720 |
| Insurance | $0 |
| All other expenses | $0 |
| Total functional expenses | $1,253,284 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $427,066 |
| Savings and temporary cash investments | $254,849 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $57,180 |
| 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 | $8,344 |
| Net Land, buildings, and equipment | $9,540 |
| Investments—publicly traded securities | $524,425 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $1,281,404 |
| Accounts payable and accrued expenses | $21,168 |
| Grants payable | $67,490 |
| Deferred revenue | $155,000 |
| 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 | $243,658 |
| Net assets without donor restrictions | $976,671 |
| Net assets with donor restrictions | $61,075 |
| 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 | $0 |
| Total liabilities and net assets/fund balances | $1,281,404 |
Grants Awarded
Over the last fiscal year, Lgs Foundation has awarded $22,500 in support to 4 organizations.
| Grant Recipient | Amount |
|---|---|
NORTHWESTERN UNIVERSITY PURPOSE: RESEARCH TO STUDY LGS | $5,000 |
STANFORD UNIVERSITY PURPOSE: RESEARCH TO STUDY LGS | $10,000 |
UNIVERSITY OF MELBOURNE PURPOSE: RESEARCH TO STUDY LGS | $5,000 |
CHILDRENS HOSPITAL OF ORANGE COUNTY PURPOSE: RESEARCH TO STUDY LGS | $2,500 |