LGS Foundation

What LGS Foundation does

The LGS Foundation is a 501(c)(3) nonprofit patient advocacy organization founded in 2008 and headquartered at 6030 Santo Road, Suite 1, Unit 420878, San Diego, California. It is dedicated to improving outcomes for individuals affected by Lennox-Gastaut Syndrome, a rare and severe developmental epileptic encephalopathy estimated to affect roughly 48,000 people in the United States and about 1 million worldwide. The Foundation's mission spans research funding, awareness, education, and direct family support; its founder is Christina SanInocencio, PhD, and it is currently led by Executive Director Tracy Dixon-Salazar, PhD, supported by Scientific Director Mike McConnell, PhD, and Director of Family Support Jennifer Griffin.

The Foundation's core technology assets are two patient-data platforms: the LGS-CORE Study, co-launched with the National Organization for Rare Disorders (NORD) in February 2025 using the IAMRARE registry infrastructure to collect natural history data on LGS and LGS-Related Developmental and Epileptic Encephalopathies; and the LGS Learn from Every Patient Database, launched in 2023 across three planned phases to document lifetime medical impacts. The Cure LGS 365 Research Grants program funds investigator-led research at $25,000, $50,000, or $75,000 levels, while the "Powering Breakthroughs: Tackling The 3 Grand Challenges" framework organizes work around precision diagnoses, precision treatments, and whole-life care. In June 2026 the Foundation launched the LGS & Associated DEE Research Accelerator, a pre-competitive partnership intended to convene biopharma, academia, and patient advocacy around biomarker-based patient stratification.

The Foundation's revenue model is philanthropic: individual and corporate donations, fundraising through Walk for LGS Research events nationwide (and the legacy Walk 'n' Wheel format), merchandise sales via the LGS Foundation Store, and research grant inflows from corporate sponsors including a disclosed $100,000 contribution from Assertio in January 2023. All family-facing services are provided free of charge, with an Elevate Patient Assistance Program covering unpaid medical expenses and equipment. The organization operates with 1-10 employees and is governed by a Board of Directors with no parent company or venture capital ownership. It holds a GuideStar Platinum Transparency Seal, a Charity Navigator top rating, and Great Nonprofits recognition, and serves a global community that mobilized 425 advocates from 49 states and Washington, D.C. for Rare Across America 2024.

Name

LGS Foundation

Legal name

Lennox-Gastaut Syndrome (LGS) Foundation

Website

https://lgsfoundation.org

Company type

Private

Founded year

2008

Operating status

Operating

Headcount range

1–10 employees

Short description

The LGS Foundation is a 501(c)(3) nonprofit founded in 2008 and headquartered in San Diego that advances research, awareness, education, and family support for individuals affected by Lennox-Gastaut Syndrome, a rare developmental epileptic encephalopathy, through patient registries, research grants, and a pre-competitive industry-academic partnership platform.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy and Research Services

NAICS

Other Individual and Family Services (624190), Grantmaking and Giving Services (81321), Human Rights Organizations (813311)

SIC

Services-Health Services (8000)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Global Health Advocacy, Policy & Rights Organizations (HLAJAKAO), Learning Technology & LMS/LXP Implementation (BPACANAH)

Keywords

• Patient advocacy services
• Rare disease research
• Epilepsy support services
• Patient registry platform
• Nonprofit healthcare

Headquarters

HQ city

San Diego

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations and Charitable Contributions: Individual and corporate donations from supporters of the LGS community
2. Walk for LGS Research Events: Fundraising events held nationwide to raise funds for research initiatives
3. Walks for LGS Research: Mobilizing walks across the United States to raise funds for the Powering Breakthroughs initiative targeting precision diagnoses, precision treatments, and whole-life care
4. LGS Foundation Store: Merchandise sales through the organization's online store
5. Research Grants: Grants awarded to support research grants, animal models, and natural history studies

Distribution channels5 records

Marketing channels8 records

Core offering

The LGS Foundation is a 501(c)(3) nonprofit patient advocacy organization dedicated to improving the lives of individuals affected by Lennox-Gastaut Syndrome (LGS). It advances its mission through patient registries and natural history studies (LGS-CORE, LGS Learn from Every Patient Database), direct research grant funding (Cure LGS 365), pre-competitive industry-academia partnerships (LGS and Associated DEE Research Accelerator), family education and support programs (Learning and Resource Center, Patient Navigators, New Family Welcome Kits, Elevate Patient Assistance Program), and awareness-building events such as Walk for LGS Research, the annual Family & Professional Conference, and International LGS Awareness Day.

Product overview

The LGS Foundation is a nonprofit patient advocacy organization dedicated to improving the lives of individuals impacted by Lennox-Gastaut Syndrome (LGS), a rare developmental epileptic encephalopathy. Rather than a unified software product, the Foundation offers a portfolio of interconnected programs: the LGS-CORE Study (a patient registry developed with NORD) and LGS Learn from Every Patient Database form the data infrastructure; the Cure LGS 365 Research Grants and Powering Breakthroughs initiative drive research funding; the Elevate Patient Assistance Program provides direct family support; and awareness/education programs include International LGS Awareness Day, Walk for LGS Research, annual conferences, and the LGS Learning Resource Center. The Foundation also publishes treatment information and maintains a network of patient navigators and ambassadors.

Differentiator

Problem solved

Functional benefit

Products and services

• LGS-CORE Study (Registry) A collaborative outcomes registry study that gathers data on Lennox-Gastaut Syndrome and LGS-Related Developmental and Epileptic Encephalopathies, collecting standardized information on developmental history, medical complications, quality of life, medications, symptoms, and treatment outcomes from patient-families worldwide. Data is shared with researchers and used to accelerate clinical trials. Built on NORD's IAMRARE platform.
• LGS Learn from Every Patient Database A longitudinal medical data repository collecting medical records about individuals with LGS/LGS-DEE to document the impact of the condition over a person's lifetime across three phases. Used by researchers to understand disease progression and support therapeutic development.
• LGS and Associated DEE Research Accelerator A pre-competitive partnership uniting industry, academia, and patient advocacy to address shared research barriers for LGS and associated developmental and epileptic encephalopathies, focusing on patient stratification by biomarkers and leveraging natural history data as real-world evidence for clinical trials.
• Cure LGS 365 Research Grants Research grants program that funds basic, translational, and clinical research projects on LGS at $25,000, $50,000, or $75,000 levels, accepting unsolicited proposals year-round from academic researchers.
• Powering Breakthroughs Initiative A research initiative targeting three grand challenges: precision diagnoses, precision treatments, and whole-life care for LGS patients, with goals to catalyze at least two disease-modifying therapies into clinical trials and reduce diagnostic timelines from years to months.
• Elevate Patient Assistance Program A direct financial assistance program providing support to individuals with LGS to cover unpaid medical expenses and provide crucial medical equipment.
• Patient Navigator and Ambassador Program A program connecting LGS families with trained navigators and ambassadors who provide guidance, peer support, and resource navigation throughout their LGS journey.
• LGS Learning and Resource Center A comprehensive educational resource center providing information about LGS including treatment options, clinical trials, seizure safety, finding doctors or comprehensive care centers, and professional resources.
• LGS Family & Professional Conference An annual conference bringing together families, healthcare professionals, and researchers in the LGS community for education, networking, and community building.
• Walk for LGS Research Annual fundraising walk events held across the United States to raise funds for the Powering Breakthroughs initiative targeting precision diagnoses, precision treatments, and whole-life care.
• International LGS Awareness Day Annual international awareness campaign held on November 1st featuring social media campaigns, landmark lighting, online fundraisers, and in-person events to raise global awareness for LGS.
• New Family Welcome Kits Welcome kits provided to newly diagnosed families to help them navigate their LGS journey with essential information, educational resources, and treatment guides.
• LGS Foundation Store Online merchandise storefront selling LGS-branded products to generate revenue supporting the foundation's mission.

Quantifiable outcome

• Catalyze at least two disease-modifying therapies into clinical trials within the next decade
• +1 more outcomes

Named customers3 records

Segments5 records

Ideal customer profiles1 record

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Ten partnerships are on record, tiered core and minor.

• NORD (National Organization for Rare Disorders)coreStrategic or Co-development Partner · 24 February 2025Co-launched the LGS-CORE Study to gather data on LGS through a natural history registry. NORD provides the IAMRARE platform technology for the patient registry and ongoing technical support.
• EveryLife FoundationcoreStrategic or Co-development PartnerCollaboration for Rare Disease Week on Capitol Hill and rare disease advocacy initiatives. LGS Foundation participates in EveryLife Foundation's Rare Disease Legislative Advocates (RDLA) program.
• American Epilepsy SocietycoreStrategic or Co-development PartnerLGS Foundation announces expanded research agenda at AES Annual Meeting to accelerate research and therapeutic development. Partnership includes outreach efforts and industry collaboration.
• Biopharmaceutical Companies (LGS Therapy Developers)coreStrategic or Co-development PartnerLGS & Associated DEE Research Accelerator is open to biopharmaceutical companies advancing LGS therapies. Companies participate through contact at [email protected]. The partnership focuses on patient stratification by biomarkers and leveraging natural history data as real-world evidence for clinical trials.
• Infantile Spasms Action Network (ISAN)coreStrategic or Co-development PartnerLGS Foundation is a member of ISAN, a collaborative network of 30+ national and international entities dedicated to raising awareness of infantile spasms (IS). IS can precede LGS in 30% of cases.
• Stanford University (Soltesz Lab)coreStrategic or Co-development PartnerLGS Foundation-funded researchers Ryan Jamiolkowski MD PhD and Ivan Soltesz PhD are developing targeted seizure treatments including focused ultrasound as non-invasive deep brain stimulation for LGS.
• University of Michigan School of MedicinecoreStrategic or Co-development PartnerDr. Gita Gupta's Cure LGS 365 Research Grant study on sleep quality and seizure severity in children with LGS using wearable devices and home evaluations.
• Brigham and Women's Hospital, Harvard Medical SchoolcoreStrategic or Co-development PartnerDr. Aaron Warren's research evaluating sleep in responsive neurostimulation (RNS) clinical trials for LGS patients, assessing day-night rhythms during treatment.
• LGS DISCOVER Study Partners (Johns Hopkins, Duke, Stanford, CHOP, UCSF, etc.)minorStrategic or Co-development PartnerClinical trial sites for the YKP509C003 study evaluating carisbamate for LGS patients. Includes Johns Hopkins Hospital, Duke University, Stanford University, Children's Hospital of Philadelphia, and others.
• RNS System Clinical Trial Sites (NYU, MGH, Mount Sinai, Emory, UAB, UCSF)minorStrategic or Co-development PartnerStudy sites for brain-responsive neurostimulation clinical trials for teens and adults with LGS. The RNS System is being studied as adjunctive therapy for reducing generalized seizures.

Scale indicators8 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• PCDH19 Alliance: Disease-specific nonprofit for PCDH19-related epilepsy, another rare developmental epileptic encephalopathy. Comparable in scale and operating model — small team, registry-driven research, family support, advocacy — and overlaps in DEE research interests.
• Tuberous Sclerosis Alliance: Disease-specific nonprofit supporting another rare genetic disorder (tuberous sclerosis complex) that causes epilepsy among other manifestations. Operates a similar portfolio of research grants, natural history studies, patient assistance, and advocacy — a strong structural peer.
• Dravet Syndrome Foundation: Disease-specific nonprofit serving another rare developmental and epileptic encephalopathy (Dravet syndrome) with research grants, patient registry, family support, and pharma engagement. Highly comparable model — single-disease focus, registry-driven research, family advocacy — making it the closest analog to LGS Foundation.
• CURE Epilepsy: Epilepsy-focused nonprofit funding patient-focused research grants and supporting families, including those with LGS. Comparable because it operates in the same epilepsy patient population and competes for the same research-grant and donor dollars, though its scope is broader than a single syndrome.
• KCNQ2 Cure Alliance: Small disease-specific nonprofit for KCNQ2-related developmental and epileptic encephalopathy — another DEE in the same clinical family as LGS. Highly comparable organizational scale, model, and patient population characteristics.
• Charlie Foundation for Ketogenic Therapies: Nonprofit advancing ketogenic dietary therapies — a treatment modality frequently used in LGS — through research, education, and family support. Comparable audience and treatment-overlap with LGS Foundation's clinical resources.

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella rare-disease advocacy organization that hosts the IAMRARE registry platform used by LGS-CORE and many other disease foundations. Comparable as a research-grant-making, advocacy, and patient-support nonprofit, although broader in scope.
• Epilepsy Foundation of America: Largest U.S. epilepsy patient advocacy organization with broad programs across research, education, advocacy, and family support. Competes with LGS Foundation for donors, advocacy attention, and pharma partnerships but covers all epilepsies rather than specializing in LGS.
• EveryLife Foundation for Rare Diseases: Rare disease policy and advocacy nonprofit that convenes disease foundations including LGS Foundation (via the RDLA program). Comparable on advocacy and policy engagement but operates as an umbrella rather than a single-disease foundation.
• Child Neurology Foundation: Nonprofit supporting children with neurologic conditions including LGS, funding research and education. Overlaps on pediatric neurology family support and clinician education but is broader than a single-disease model.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/lgs_foundation
• YouTubeyoutube.com/user/lgsfoundation
• Facebookfacebook.com/lgsfoundation1
• LinkedInlinkedin.com/company/lgs-foundation
• Instagraminstagram.com/lgsfoundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Funding overview

Funding rounds1 record

Investors1 record

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M&A

Investments

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Frequently asked questions about LGS Foundation