Nonprofit · EIN 26-2051377
LGS FOUNDATION
Tax-exempt · SAN DIEGO, CA 92142
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2024 | 990 | $1,248,197 | $1,565,600 | -$317,403 | $984,047 | $260,544 | $723,503 |
| December 31, 2023 | 990 | $1,070,661 | $1,253,284 | -$182,623 | $1,281,404 | $243,658 | $1,037,746 |
Financial details: 990 for the year ended December 31, 2024
Revenue
- Contributions, gifts and grants
- $1,142,243
- Program service revenue
- $73,814
- Investment income
- $28,637
- Other revenue
- $3,503
Expenses
- Grants and similar amounts paid
- $156,000
- Compensation of officers, directors and key employees
- $227,159
- Other salaries and wages
- $389,477
- Salaries, compensation and benefits (total)
- $687,981
- Professional fundraising fees
- $0
- Legal fees
- $2,190
- Accounting fees
- $37,370
- Occupancy
- $660
- Travel
- $170,312
- Depreciation
- $9,540
- Program services (functional)
- $1,379,175
- Management and general (functional)
- $133,260
- Fundraising (functional)
- $53,165
Balance sheet and other
- Total assets, start of year
- $1,281,404
- Total assets, end of year
- $984,047
- Total liabilities, end of year
- $260,544
- Net assets, end of year
- $723,503
- Publicly traded securities
- $660,438
- Net assets without donor restrictions
- $642,281
- Net assets with donor restrictions
- $81,222
- Gross receipts
- $1,248,197
- Employees
- 11
- Volunteers
- 200
- Year formed
- 2008
- State of legal domicile
- NY
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2024, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Tracy Dixon-Salazar PhD | Executive Director Officer | 60 | $132,498 |
| Amber Mathas | Sr Director of Operations Officer | 40 | $94,661 |
| Deena Andreola | Board Member Trustee or director | 1 | $0 |
| Kat Belendiuk PhD | Board Member Trustee or director | 1 | $0 |
| Jacqueline Villatoro | Board Member Trustee or director | 1 | $0 |
| Kevin Merritt CFA | Treasurer Trustee or director, Officer | 2 | $0 |
| Dale Todd | Secretary Trustee or director, Officer | 2 | $0 |
| Fred Roedl | Chair Trustee or director, Officer | 10 | $0 |
990 for the year ended December 31, 2023: 9 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Tracy Dixon-Salazar PHD | Executive Director Officer | 60 | $133,025 |
| Brittany Brown | Member Trustee or director | 1 | $0 |
| Dale Todd | Member Trustee or director | 1 | $0 |
| Fred Roedl | Member Trustee or director | 1 | $0 |
| Melanie Huntley | Member Trustee or director | 2 | $0 |
| Karen Groff MED | Vice President Trustee or director, Officer | 8 | $0 |
| Natalie Gilmore | President Trustee or director, Officer | 10 | $0 |
| Christopher Mitchell JD | Secretary Trustee or director, Officer | 2 | $0 |
| Kevin Merritt CFA | Treasurer Trustee or director, Officer | 2 | $0 |
Address and contacts
- Address (IRS master file)
- 6030 SANTO ROAD STE 1 STE 420878, SAN DIEGO, CA 92142-7037
- In care of
- % TRACY DIXON-SALAZAR PHD
- Mailing address (990-N for 2009)
- PO Box 6948, New York NY 10150
- Principal officer (990 for 2024)
- Tracy Dixon-Salazar PhD, 6030 Santo Road STE 1 STE 420878, San Diego, CA 92142
- Principal officer (990-N for 2009)
- Christina SanInocencio, PO Box 6948, New York NY 10150
- Signed the 990
- TRACY DIXON-SALAZAR PHD, Executive Director
- Phone
- (718) 374-3800
- Website
- www.lgsfoundation.org
- Return prepared by
- Mullins PC
California records
California keeps its own records of charities and corporations. Search them by EIN 26-2051377 or by the name LGS FOUNDATION.
- Attorney General, Registry of Charities and Fundraisers
- Registration status and filed reports (CT-TR-1, RRF-1)
- Secretary of State, bizfile Online
- Corporation status, entity number, agent for service
- Franchise Tax Board
- Entity status letter (state tax exemption, good standing)
Mission
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.
Program accomplishments
- LGS Family Support, Education, and Empowerment Programs: Receiving a diagnosis of LGS is overwhelming and leaves families with many unanswered questions. The LGS Foundation provides comprehensive support and educational programs to over 12,000 members impacted by LGS, offering direct assistance through individual consultations, resource navigation, and financial aid for medical expenses not covered by insurance. In 2024, our private, online caregiver community reached 7,500 members, with 51 ambassadors in 8 countries who help local families navigate the LGS journey. In 2024, 653 new families were onboarded to our support community and 34 online support groups were hosted, including groups for Spanish-speaking families, Dads, and Caregivers of Adults living with LGS. 461 New Family Welcome Kits, 224 About LGS Treatment Kits, 246 Sibling Support Kits, and 494 Adult Care Binders were mailed to help families navigate the different stages of their LGS journeys. The LGS Foundation also supported approximately 140 bereaved families who have lost their loved ones to LGS. Further, we have funded over $120,000 in patient assistance grants since our inception. The LGS Foundations family support and education efforts continue to grow as we focus on supporting families locally and globally.Expenses $642,921 · grants $156,000 · revenue $38,067
- The LGS Foundation organized its biennial International Family & Professional Conference, hosting three days of educational, scientific, and community-building sessions for more than 350 attendees, including families, clinicians, scientists, allied health providers, and industry partners around the world. The conference featured 18 expert-led educational sessions, six interactive clinical and research workshops, and breakout groups on sleep management, SUDEP prevention, behavioral and cognitive therapies, and transition planning to adult care. Dedicated family engagement programming included a Sib Camp for siblings, full inclusion of individuals with LGS, and caregiver roundtables to share lived expertise and foster peer connections. LGS Family and Professional Conference: Additionally, the conference provided access to one-on-one consultations with renowned epilepsy experts, allowing families to ask questions about diagnosis, therapies, genetic testing, and individualized care strategies. An on-site resource fair, supported by 14 partner organizations and sponsors, gave participants direct access to information on clinical trials, assistive technologies, and community services. The Foundation awarded 168 travel scholarships, 84 for individuals who have never attended the conference, and provided accessibility services to ensure the event was inclusive and accessible to families who could not attend. Conference presentations were recorded and distributed post-event, with over 6,500 views and ongoing access supporting lifelong learning for stakeholders unable to attend in person. This multifaceted event continues to advance the LGS Foundations goal of nurturing a well-informed, resilient, and interconnected global community.Expenses $509,516
- Research Grants and Funded Initiatives: To date, the LGS Foundation has hosted 12 international LGS research convenings and awarded over $2 million in competitive research grants supporting 18 high-impact projects focused on understanding disease mechanisms, improving treatments, and advancing toward cures for LGS. These convenings and grants have contributed to significant scientific progress, including studies on novel therapeutic approaches and clinical trial endpoints. The Foundations research portfolio supported 2 new funded studies in 2024, one on moving us towards preventing LGS by identifying early risk factors and one on formulating an international consensus for the diagnosis and management of LGS. Findings from convenings and grants are published in peer-reviewed journals and presented at major scientific conferences. The LGS Foundation also supports the LGS Learn from Every Patient Database, a natural history registry that includes electronic health records and real-world data from caregivers living with LGS. 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, targeted treatments, genetics, epidemiology, and neural networks. The Foundations commitment to research has helped accelerate research on LGS, which would not otherwise be undertaken. These accomplishments reflect the Foundations dedication to improving the lives of individuals with LGS and their families through robust support, education, and research initiatives.Expenses $226,738
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | Not on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 26-2051377
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2008
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G80)
- Assets (IRS master file)
- $984,047
- Income (IRS master file)
- $1,248,197
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2024 | $1,248,197 | $1,565,600 | $984,047 | XML |
| 990 | December 2023 | $1,070,661 | $1,253,284 | $1,281,404 | XML |
| 990 | December 2022 | $1,363,205 | $1,379,227 | $1,598,197 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2019 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
| 990-N for 2009 Officer: Christina SanInocencio | December 31, 2009 | ≤ $50,000 receipts | – | – | e-Postcard |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 26-2051377).
Questions about LGS FOUNDATION
- What is the EIN of LGS FOUNDATION?
- The employer identification number (EIN) of LGS FOUNDATION is 26-2051377.
- Is LGS FOUNDATION tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2008.
- Are donations to LGS FOUNDATION tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does LGS FOUNDATION file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of LGS FOUNDATION due?
- The return for tax year 2025 (the year ending December 31, 2025) is due May 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did LGS FOUNDATION last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2024.
- Who is the principal officer of LGS FOUNDATION?
- The 990 for the year ended December 31, 2024 names Tracy Dixon-Salazar PhD.
- Who are the officers and directors of LGS FOUNDATION?
- The 990 for the year ended December 31, 2024 lists 8 people; 2 received compensation from the organization, the highest $132,498 (Tracy Dixon-Salazar PhD, Executive Director).
- How much revenue does LGS FOUNDATION have?
- On its 990 for the year ended December 31, 2024 it reported revenue of $1,248,197, expenses of $1,565,600 and total assets of $984,047 at year end.
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