2026-09-02T11:37:37-07:00 2026-03-31 990 2025-04-01 332385692 THE MEF2C FAMILY FOUNDATION INC MEF2 9546954441 2389 Main Street Glastonbury CT 06033 Aleah Vickers Director of Operations 9546954441 2026-09-01 2025 Aleah Vickers 7 Evergreen Way Sleepy Hollow NY 10591 265855 0 X www.mef2cfamilyfoundation.org X 2024 CT We connect, support, and empower families who have loved ones with MEF2C-related disorders. We are also advocates for curing this rare disease, and aim to connect clinicians, researchers, and biotech companies with our patient population. 5 5 0 6 0 0 11423 265010 0 7 845 0 11430 265855 88911 0 0 0 0 1812 4611 1812 93522 9618 172333 9618 181951 0 0 9618 181951 X We connect, support, and empower families who have loved ones with MEF2C-related disorders. We are also advocates for curing this rare disease, and aim to connect clinicians, researchers, and biotech companies with our patient population. 0 0 88911 88911 0 Entered into a Sponsored Research Agreement (SRA) with the University of Texas Southwestern (UTSW) Medical Center to fund preclinical gene therapy research for MEF2C Haploinsufficiency Syndrome. During the tax year, the research team successfully completed Milestone 1 by designing, developing, and validating the novel AAV9fyhr viral vector expressing the MEF2C gene. This work establishes the essential vector construct required for downstream efficacy and safety testing aimed at advancing disease modifying therapies toward clinical trials. 955 0 Executed educational, promotional, and advocacy initiatives directed to the patient community, clinical stakeholders, and the broader public. Program activities focused on raising awareness of MEF2C Haploinsufficiency Syndrome, advocating for affected individuals and families, expanding patient registry participation, and connecting the rare disease community with critical scientific and medical resources. 0 0 0 89866 1 1 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 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 X 5 5 1 0 0 0 0 0 0 1 1 0 0 1 0 0 0 0 0 0 CT X Aleah Vickers 9546954441 7 Evergreen Way Sleepy Hollow NY 10591 X X Aleah Vickers Board Chair 10 0 X 0 0 0 Meredith San Antonio Director 10 0 X 0 0 0 Caroline Claflin Director 10 0 X 0 0 0 Erin Kindrachuk Director 10 0 X 0 0 0 Stephanie Fitzpatrick Director 10 0 X 0 0 0 Chris Knihnitski Officer 10 0 X 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 265010 0 265010 0 0 0 0 0 845 0 0 845 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 0 0 0 0 0 0 0 0 0 0 265855 0 0 845 X 88911 88911 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 1593 0 1593 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 955 955 0 0 2063 0 2063 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 0 0 0 0 93522 89866 3656 0 9618 181951 9618 181951 0 0 X 9618 181951 0 0 9618 181951 9618 181951 172333 0 0 0 0 0 X 0 0 0 X 11423 265010 276433 0 0 0 11423 265010 276433 8967 267466 7 845 852 277285 2684 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 UT Southwestern Medical Center PO Box 841765 Dallas TX 75284 756002868 88911 Sponsored Research 1 0 Schedule I, Part I, Line 2 The organization maintains strict oversight and recordkeeping procedures to monitor all grant disbursements and ensure funds are utilized strictly for their designated tax-exempt purpose. Under the terms of the Sponsored Research Agreement (SRA) with the UT Southwestern Medical Center (UTSW), grant oversight is maintained through required periodic reporting and formal project assessment update meetings. The organization's leadership conducts regular progress meetings with the lead principal investigator and research team to review preliminary scientific findings, evaluate milestone achievements against the project timeline, and monitor budget expenditures. Continued funding disbursements are contingent upon satisfactory progress reports, compliance with institutional research standards, and verification that funds are executed in accordance with the approved research scope for MEF2C Haploinsufficiency Syndrome. Form 990, Part III, Line 2 The organization entered into a new Sponsored Research Agreement (SRA) with UTSW Medical Center during the tax year to fund pre-clinical gene therapy research for MEF2C Haploinsufficiency Syndrome. Form 990, Part VI, Section A, Line 2 Director Erin Kindrachuk and Officer Chris Knihnitski have a spousal family relationship. Pursuant to the organization's bylaws, spouses serving as directors or officers are permitted a single collective vote at the board level. Accordingly, Chris Knihnitski serves solely in an officer capacity and does not hold an independent voting seat on the Board of Directors. Form 990, Part VI, Section B, Line 11b A complete draft of Form 990, including all required schedules, was provided to all voting members of the Board of Directors via email prior to its filing with the IRS. The Treasurer and Executive Director conducted a detailed review with the board during a regular meeting to answer questions and verify figures. Form 990, Part VI, Section B, Line 12c Board members are obligated to disclose any actual, potential, or perceived conflicts of interest as they arise. If a potential conflict is identified regarding a board decision or financial transaction, the affected individual is required to recuse themselves from all board discussions, deliberations, and voting related to the matter. All disclosures, recusals, and decisions involving potential conflicts are formally documented in the board meeting minutes. Form 990, Part VI, Section C, Line 19 The organization makes its governing documents, conflict of interest policy, and annual financial statements available to the general public upon written request. Additionally, copies of Form 990 and Form 1023 are available on public databases such as Candid (GuideStar) and ProPublica. Form 990, Part VII, Section A, Line 1a All members of the Board of Directors and Officers of the organization serve entirely on a voluntary basis. No director, officer, or key individual received any reportable compensation, health or retirement benefits, or other deferred compensation from the organization during the tax year. The organization does not have any employees. Form 990, Part IX, Line 1 UTSW grant payment of $88,911. See Schedule I, Part II. Form 990, Part IX, Line 11g Contracted legal services of $1,593. Form 990, Part IX, Line 12 Promotional expenses of $955. Form 990, Part IX, Line 13 Miscellaneous office and administrative operating expenses of $2,063 MEF2C Family Foundation is a small, volunteer-run nonprofit organization led by parents and caregivers of children affected by MEF2C-related disorders. The Foundation does not have dedicated administrative staff, and its officers and directors perform the organization's administrative and compliance responsibilities on a volunteer basis while also managing substantial caregiving responsibilities for children with significant disabilities and medical needs. During the period leading up to the filing deadline, these circumstances significantly limited the administrative capacity of the Foundation's volunteer leadership. As a result, the Foundation inadvertently failed to timely file its Form 990 or request an extension by the August 17, 2026 deadline. The failure was not willful and was not due to an intentional disregard of the Foundation's filing obligations. Upon recognizing that the filing deadline had passed, the Foundation promptly took steps to prepare and electronically file the return. The Foundation has also taken steps to prevent a recurrence, including calendaring its annual Form 990 filing and extension deadlines in advance and establishing a process for earlier preparation and review of future returns. MEF2C Family Foundation respectfully requests abatement of any late-filing penalty based on reasonable cause.