2026-06-02T20:37:39-04:00 2024-12-31 990 2024-01-01 920771031 Rare Olive Org Inc RARE 3013254068 9800 Parkwood Dr Bethesda MD 20814 Andrew Flickinger Treasurer & Secretary 3013254068 2026-06-03 false 2024 2025-03-06 01:10:19Z Lauren Flickinger 9800 Parkwood Dr Bethesda MD 20814 444605 false X https: rareolive.org X 2022 DE Rare Olive Org Inc supports treatment research and patient advocacy for Lunapark Syndrome LNPK an ultra-rare genetic disorder. Founded by a family whose daughter was the first known LNPK case in the United States we are committed to building a path forward for patients and families worldwide. 2 0 0 0 0 0 404398 0 915 9329 414642 299677 0 0 0 0 3610 303287 111355 137497 0 137497 X Rare Olive Org Inc supports treatment research and patient advocacy for Lunapark Syndrome LNPK an ultra-rare genetic disorder. Founded by a family whose daughter was the first known LNPK case in the United States we are committed to building a path forward for patients and families worldwide. false false 0 0 0 Sponsored research grant with the Gray Lab at University of Texas Southwestern to develop validate and test safety efficacy of a gene therapy replacement therapy in restoring the LNPK protein in a mouse disease model. 0 true true false false false false false false false false false false false false false false false false false false false false false false true false false true false false false false false false false false false false false false false false false false false false false false true 0 0 0 false false false false false false false false X 2 0 true false false false false false false false false false false true false false false false false false DE MD X Andrew Flickinger 3013254068 9800 Parkwood Drive Bethesda MD 208144028 X Lauren Flickinger President CEO 10.00 0.00 X 0 0 0 Andrew Flickinger Treasurer Secretary 5.00 0.00 X 0 0 0 0 0 0 0 false false false 0 0 0 0 0 404398 0 404398 0 915 0 0 915 0 0 0 0 0 0 0 0 0 0 0 0 39292 0 29963 9329 0 9329 0 0 0 0 0 0 0 414642 0 0 10244 299677 0 0 0 0 0 0 0 0 0 0 0 0 0 1821 0 1821 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Banking and other administrative expenses 808 0 808 0 Apparel and merchandise 610 0 610 0 Office supplies 371 0 371 0 303287 0 3610 0 26142 137497 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 26142 137497 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 X 26142 137497 0 0 0 0 26142 137497 26142 137497 111355 0 0 0 0 0 X false false false X 0 0 52050 61307 404398 517755 0 0 52050 61307 404398 517755 0 0 52050 50000 0 102050 0 0 52050 50000 0 102050 415705 0 0 0 98 915 1013 0 0 0 98 915 1013 0 0 52050 61405 405313 518768 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Jolly Fest 39292 0 39292 0 1744 5375 20153 2406 285 39292 0 39292 0 1744 5375 20153 2406 285 29963 9329 true Steven Gray Laboratory UTSW Medical 6000 Harry Hines Blvd Suite NA2 508 Dallas TX 75390 756002868 501(c)(3) 299677 0 Sponsored research grant with the Gray Lab at University of Texas Southwestern to develop validate and test safety and efficacy of a gene replacement therapy in restoring the LNPK protein in a mouse disease model. 1 0 Part I Line 2 Rare Olive Org Inc monitors the use of grant funds through regular communication with grantee organizations including periodic progress updates and reports on research activities funded by the grant. The organization reviews financial documentation and receipts provided by grantees to verify that funds are being used for their intended purpose. As a small nonprofit the President maintains direct oversight of all grants and follows up with grantees as needed. Part VI, Line 2 | Employee:, Relationship:, Employee:| Lauren Flickinger, Family Relationship, Andrew Flickinger| Andrew Flickinger, Family Relationship, Lauren Flickinger| Part VI, Section A, Line 8b Rare Olive Org Inc is a small two-person nonprofit governed by its founding members. The organization does not hold formal board meetings but documents significant decisions and actions through written communications between officers including email records. Major financial decisions grant approvals and organizational actions are discussed and agreed upon by both officers and retained in the organizations records. A more formal meeting documentation practice will be established as we grow. Part VI, Section B, Line 11b Rare Olive Org Inc follows a review process for its annual Form 990 prior to filing. The completed return is prepared and reviewed by both officers of the organization. Each officer independently reviews the return for accuracy completeness and consistency with the organizations financial records for the year. Any discrepancies or questions are discussed and resolved before the return is filed. As a small two-person nonprofit both governing body members are directly involved in the review. Part VI, Section C, Line 19 No documents available to the public Part V,line 33 | Explanation:| Rare Olive Org Inc is a family-founded nonprofit organization dedicated to sponsoring treatment research and patient advocacy for Lunapark Syndrome LNPK an ultra-rare genetic disorder. The organization was founded after our youngest daughter became the first known case of LNPK diagnosed in the United States. Our mission is to ensure that rare does not mean forgotten and to build a path toward effective treatments for patients and families worldwide. Part V,line 34 | Explanation:| Rare Olive Org Inc is filing its 2024 Form 990-EZ late due to circumstances outside its control. In late 2022 the organization inadvertently failed to file a return for a short partial-year period resulting in automatic revocation of its tax-exempt status. Upon learning of the revocation the organization attempted to e-file outstanding returns but submissions were rejected because exempt status was not recognized in IRS systems. Reinstatement was not completed until October 2025 and not fully reflected in IRS electronic systems until April 2026. This filing is submitted at the first opportunity following reinstatement. The organization believes this constitutes reasonable cause under IRC 6652. Part VI,line 11b | Explanation:| The completed Form 990 is reviewed by both officers of the organization prior to filing. Each officer independently reviews the return for accuracy completeness and consistency with the organizations financial records. Any discrepancies are discussed and resolved before submission. As a two-person nonprofit both governing body members maintain direct familiarity with all financial activity throughout the year. The organization intends to engage a qualified tax professional to assist with preparation and review as resources allow. Part VI,line 12c | Explanation:| Rare Olive Org Inc is governed by two officers who are married. The organization acknowledges this family structure and operates transparently disclosing all related-party relationships on its annual Form 990-EZ filing. A written Conflict of Interest Policy was adopted in 2025. All transactions involving related parties including a charitable donation received from a family member of the founders were conducted at arms length with no goods or services provided in return. Part VI,line 14 | Explanation:| As a two-person nonprofit governed by a married couple the organization does not hold formal board meetings. Organizational decisions are made jointly by both officers and documented through written communications including email records. Major financial decisions grant approvals and significant organizational actions are discussed agreed upon by both officers and retained in the organizations records. The organization intends to implement more formal meeting documentation practices going forward. Part III,line 31 | Explanation:| Rare Olive Org Inc monitors the use of grant funds through regular communication with grantee organizations including periodic progress updates and reports on research activities funded by the grant. The organization reviews financial documentation provided by grantees to verify funds are used for their intended purpose. As a small nonprofit the Executive Director maintains direct oversight of all grants and follows up with grantees as needed to ensure alignment with the organizations mission of advancing treatment research for Lunapark Syndrome LNPK. Part III,line 28 | Explanation:| During 2024 Rare Olive Org Inc continued its partnership with the Gray Lab at UT Southwestern Medical Center UTSW led by Dr. Steven Gray to fund and advance gene therapy research for Lunapark Syndrome LNPK. This research partnership which began in 2023 represents the only known active treatment research program for LNPK in the United States. The Gray Labs work focuses on developing an AAV-based gene therapy capable of delivering functional LNPK genetic material to brain cells. During 2024 the research team completed critical safety and efficacy studies using a modified JeT promoter vector. The safety profile was encouraging with no observed neurotoxicity across dosed animal cohorts - a significant improvement over earlier vectors. Behavioral testing conducted at three months identified measurable rescue in startle response and rearing phenotypes in the high-dose intrathecal treatment group demonstrating early evidence of treatment benefit. Based on these findings the Gray Lab identified a next-generation viral capsid called FHYR which has demonstrated greater potency than the AAV9 vector previously used allowing for greater transduction of brain cells. The research program is transitioning to this improved vector in pursuit of more complete symptom rescue. Rare Olive Org Inc is actively funding this next phase of research. This research is deeply personal to the organizations founders. Their daughter Olive for whom the organization is named was the first known diagnosed case of LNPK in the United States. Olive continues to receive therapies and remains the inspiration behind every dollar raised and granted in furtherance of this mission. Rare Olive Org Inc is a small all-volunteer nonprofit with two members and no paid staff. In late 2022 we were unaware that a short partial-year period required a separate Form 990-EZ filing. This was not willful disregard - as a two-person volunteer organization we lacked the professional guidance to recognize this obligation. The inadvertent omission resulted in the automatic revocation of our tax-exempt status. Upon learning of the revocation we promptly began the reinstatement process and attempted to e-file our outstanding returns but our submissions were rejected by the IRS electronic filing system because our exempt status was not recognized. Reinstatement was not completed until October 2025 and not fully reflected in the IRS electronic systems until April 2026. We were unable to file as a tax-exempt organization even when we actively tried to do so. The late filing of our 2024 return is a direct consequence of this revocation and the extended reinstatement timeline.