2025-11-10T14:13:53-05:00 2024-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2024-01-01 262051377 LGS Foundation Inc % Tracy Dixon-Salazar PhD LGSF 7183743800 6030 Santo Road STE 1 STE 420878 San Diego CA 92142 TRACY DIXON-SALAZAR PHD Executive Director 7183743800 2025-11-10 true true JOHN MULLINS P01429307 2027706371 2025-11-10 2024 2025-03-06 01:10:19Z Lennox-Gastaut Syndrome LGS Fd Tracy Dixon-Salazar PhD 6030 Santo Road STE 1 STE 420878 San Diego CA 92142 1248197 false X www.lgsfoundation.org X 2008 NY 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. 6 6 11 200 0 0 1023273 1142243 32846 73814 14542 28637 3503 1070661 1248197 125951 156000 0 644560 687981 0 53165 482773 721619 1253284 1565600 -182623 -317403 1281404 984047 243658 260544 1037746 723503 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. false false 642921 156000 38067 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. 509516 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. 226738 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. 1379175 true true false false false false false false false false true false false false false true true false false false false false false false false false false true false false false false false false false false false false false false false false false false false false false true 8 0 true 11 true false false false false false false false false false false X 6 6 false true false false false false false true true false false true true true true false false false false false X LGS FOUNDATION INC 7183743800 6030 Santo Road Suite 1 NO 420878 San Diego CA 92142 Tracy Dixon-Salazar PhD Executive Director 60.00 0.00 X 132498 0 0 Amber Mathas Sr Director of Operations 40.00 0.00 X 94661 0 0 Deena Andreola Board Member 1.00 0.00 X 0 0 0 Kat Belendiuk PhD Board Member 1.00 0.00 X 0 0 0 Jacqueline Villatoro Board Member 1.00 0.00 X 0 0 0 Kevin Merritt CFA Treasurer 2.00 0.00 X X 0 0 0 Dale Todd Secretary 2.00 0.00 X X 0 0 0 Fred Roedl Chair 10.00 0.00 X X 0 0 0 227159 0 0 1 false false false 1142243 1142243 Registration 900099 9495 9495 Contracts 900099 28572 28572 Special Events 900099 35747 35747 73814 28637 28637 0 Miscellaneous 900099 3503 3503 3503 1248197 77317 0 28637 X 156000 156000 227159 193902 22898 10359 389477 332456 39260 17761 20965 14889 5972 104 50380 43000 5070 2310 2190 2190 37370 37370 139452 130672 8780 32656 32656 28859 15282 9468 4109 48367 46450 1469 448 660 660 170312 170312 252213 234016 123 18074 9540 9540 1565600 1379175 133260 53165 427066 130483 254849 52368 57180 81222 8344 59536 38159 38159 9540 524425 660438 1281404 984047 21168 5054 67490 139990 155000 115500 243658 260544 X 976671 642281 61075 81222 1037746 723503 1281404 984047 -317403 3160 0 X X false true X true false X 858808 493746 1022347 1023273 1142243 4540417 19720 208987 31006 45242 304955 357168 272000 132703 1840 28572 792283 1215976 785466 1364037 1056119 1216057 5637655 0 0 0 0 0 0 5637655 120 97 14542 28637 43396 120 97 14542 28637 43396 3503 3503 1216096 785563 1364037 1070661 1248197 5684554 0.99170 0.99720 0.01000 0.00000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 38159 38159 X 1251357 3160 3160 1248197 1248197 1565600 1565600 1565600 Part XI, Line 2d-Other revenue included on Sch D but not on 990 Event Expenses Part XII, Line 2d-Other expenses included on Sch D but not on 990 Event Expenses Part X, Line 2-Text in footnote regarding FIN 48 (ASC 740) The Foundation is exempt from federal income taxes under section 501(c)(3) of the Internal Revenue code. The accounting standard on accounting for uncertainity in income taxes addresses the determination of whether tax benefits claimed or expected to be claimed on a tax return should be recorde in the financial statements. Under that guidance, the Foundation may recognize the tax benefit from an uncertain tax position only if it is more likely than not that the tax position will be sustained on examination by taxing authorities based on the techincal mertis of the position. Examples of tax positions include the tax exempt status of the Foundation and various positions related to the potential sources of unrelated business taxable income (UBIT). The tax benefits recognized in the financial Statements from such a position are measured based on the largest benefit that has a greater than 50% likelihood of being realized upon ultimate settlement. There were no unrecognized tax benefits identified or recorded as liabilties for at December 31, 2024. The Foundations policy would be to recognize interest and penalties, if any, on tax positions related to its unrecognized tax benefits in income tax expense in the financial statements. No interest and penalties were assessed or recorded during 2024. Generally, the Foundation is no longer subject to U.S. Federal or State examinations for returns filed prior to the previous three years. true Stanford University PO Box 884253 Los Angeles CA 90088 941156365 501C3 37500 Grant Mayo Clinic 200 First St SW Rochester MN 55905 416011702 501C3 30000 Grant Danny Did Foundation 3008 Central St Ste 203 Evanston IL 60201 271642251 501C3 5000 Grant Northwestern University 750 N Lake Shore Drive Chicago IL 60611 362167817 501C3 5000 Grant 4 Additional Information for Schedule I Grant applications are received throughout the year and qualified applicants affiliated with an accredited university are reviewed by an external review panel of scientific experts. Scientific scoring is based on the NIH R01 Grant scoring system and final scientific scores are shared with the Research Committee and Board of Directors (BOD). The LGS Foundation BOD then considers the scientific merit of each grant in the context of organizational goals and votes to fund approved research grants throughout the year. Grantees provide progress reports every 6 months to 1 year depending upon the length of the grant, which allows allocation of funds for the next grant period, and must provide final progress reports at the end of the project. Management duties delegation Part VI line 3 Contractors are hired to perform research consulting to L.G.S. Foundation in order to help provide additional research and resources for explanation in relation to Lennox-Gastaut Syndrome. Form 990 governing body review Part VI line 11 A copy of form 990 and all related schedules is provided to the executive committee of the board of directors and the full board of directors for review prior to filing with the Internal Revenue Service. Conflict of interest policy compliance Part VI line 12c A conflict of interest disclosures statement is distributed and signed by each board member annually. Conflicts are dealt with on a case-by-case basis. Governing documents etc available to public Part VI line 19 LGSF makes its governing documents and conflict of interest policy available to the public upon prior written request from the president. Financial statements are available for public view on the organizations website. Audited by an independent accountant Part XII line 2b The finance committee is responsible for overseeing the audit. List of other fees for services expenses Part IX line 11g Contracted Services: $130,672Payroll Fees: $8,780