2024-11-11T19:13:38-05:00 2023-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2023-01-01 262051377 LGS Foundation Inc LGSF 6030 Santo Road STE 1 STE 420878 San Diego CA 92142 Tracy Dixon-Salazar PHD Executive Direc 7183743800 2024-11-11 true true John Mullins P01429307 2027706371 2024-11-11 2023 2024-10-15 13:58:12Z Lennox-Gastaut Syndrome LGS Fd Tracy Dixon-Salazar PHD 1070661 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. 8 8 9 125 0 0 969915 1023273 182895 32846 190 14542 210205 0 1363205 1070661 161594 125951 0 566752 644560 0 60677 650881 482773 1379227 1253284 -16022 -182623 1598197 1281404 382191 243658 1216006 1037746 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 798620 1840 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. 142373 31006 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. 137557 125951 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. 1078550 true true false false false false false false false false true false false false false true true false false false true true 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 6 0 true 9 true false false false false false false false false false false X 8 8 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 133025 0 0 Brittany Brown Member 1.00 0.00 X 0 0 0 Dale Todd Member 1.00 0.00 X 0 0 0 Fred Roedl Member 1.00 0.00 X 0 0 0 Melanie Huntley Member 2.00 0.00 X 0 0 0 Karen Groff MED Vice President 8.00 0.00 X X 0 0 0 Natalie Gilmore President 10.00 0.00 X X 0 0 0 Christopher Mitchell JD Secretary 2.00 0.00 X X 0 0 0 Kevin Merritt CFA Treasurer 2.00 0.00 X X 0 0 0 133025 0 0 1 false false false 1023273 23691 1023273 Registration 900099 31006 31006 Contracts 900099 1840 1840 32846 14542 14542 1070661 32846 0 14542 50951 50951 75000 75000 133025 113004 13370 6651 461064 391673 46337 23054 2149 1826 216 107 48322 41049 4856 2417 3348 1911 1417 20 34342 19598 14538 206 52081 29722 22047 312 103937 101686 878 1373 21890 12324 9066 500 38983 37616 1178 189 1614 1614 29805 29801 4 184053 159669 -1464 25848 12720 12720 1253284 1078550 114057 60677 414295 427066 836160 254849 261565 57180 58206 8344 38159 28619 22259 9540 5712 524425 1598197 1281404 25691 21168 22500 67490 334000 155000 382191 243658 X 913375 976671 302631 61075 1216006 1037746 1598197 1281404 -182623 4363 0 X X false true X true false X 775527 858808 493746 1022347 1023273 4173701 19720 208987 31006 259713 25454 357168 272000 132703 1840 789165 800981 1215976 785466 1364037 1056119 5222579 5222579 120 97 14542 14759 120 97 14542 14759 98 98 801079 1216096 785563 1364037 1070661 5237436 0.99720 0.99990 0.00000 0.00000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 38159 28619 9540 9540 X 1075024 4363 4363 1070661 1070661 1253284 1253284 1253284 Footnote for uncertain tax position under FIN 48 (Part X) 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, 2023. 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 2022. Generally, the Foundation is no longer subject to U.S. Federal or State examinations for returns filed before 2018. true East Asia and the Pacific Program services Research 75000 75000 75000 East Asia and the Pacific Research 75000 1 false false false false false false true University of Michigan 3003 South State Street Suite 9000 Ann Arbor MI 48109 386006309 501C3 49951 Research to study LGS 1 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.