Skip to content
Nonprofiteer
← All organizations

MED13L FOUNDATION INC

EIN 82-2469441 PARK RIDGE, IL

Browse the largest nonprofits in Illinois

Revenue 2024
$188,215
Expenses 2024
$348,032

Program services were 84.1% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
NTEE code
H11
Classification
1800
Street
14 MAIN ST

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2024

Mission

MED13L PROVIDES SUPPORT FOR RESEARCH, ADVANCEMENT AND RAISING AWARENESS OF THE RARE GENETIC DISEASE, MED13L. THE OBJECTIVES OF MED13L IS TO RAISE AWARENESS IN THE LOCAL, NATIONAL AND INTERNATIONAL COMMUNITY ABOUT THE RARE GENETIC DISEASE, MED13L AND TO PROVIDE FUNDING FOR RESEARCH, DEVELOPMENT AND ADVANCEMENT INTO FIGHTING THIS DISEASE. THE ULTIMATE GOAL IS TO FIND OUT MORE ABOUT WHAT CAUSES MED13L AND FIND A CURE. IN OUR ENDEAVOR TO REACH THAT GOAL, MED13L STRIVES TO CREATE A SUPPORT SYSTEM FOR FAMILIES IMPACTED BY MED13L ALL THE WHILE PROVIDING FUNDING OPPORTUNITIES TO HEALTHCARE PROFESSIONALS AND RESEARCHERS WHO ARE HELPING TO FIND A CURE TO THIS RARE GENETIC DISEASE.

Activities or mission (Part I)

THE MISSION OF THE CORPORATION IS TO: (A) INCREASE AWARENESS WITHIN LOCAL, NATIONAL AND INTERNATIONAL COMMUNITIES ABOUT MED 13L AND PROVIDE ACCURATE INFORMATION TO PATIENTS, FAMILIES, AND MEDICAL PROFESSIONALS; (B) RAISE AND PROVIDE CRUCIAL FUNDING FOR RESEARCH, DEVELOPMENT, AND ADVANCEMENTS IN UNDERSTANDING MED13L; (C) DEEPEN THE UNDERSTANDING OF THE UNDERLYING CAUSES OFMEDL3L AND DISCOVER EFFECTIVE TREATMENTS AND CURE, INCLUDING BY COLLABORATING WITH SCIENTISTS, RESEARCHERS, AND MEDICAL INSTITUTIONS TO SUPPORT STUDIES AIMED AT UNDERSTANDING MED13L BETTER, IDENTIFYING POTENTIAL TREATMENTS, AND IMPROVING THE QUALITY OF LIFE FOR AFFECTED INDIVIDUALS; ( D) DEVELOP EDUCATIONAL MATERIALS, HOST AWARENESS CAMPAIGNS, AND ORGANIZE WORKSHOPS OR CONFERENCES TO DISSEMINATE KNOWLEDGE ABOUT MED13L; (E) CREATE A SUPPORT NETWORK FOR INDIVIDUALS AND FAMILIES AFFECTED BY MEDL3L;

  • COORDINATE AND COLLABORATE WITH THE GLOBAL SCIENTIFIC COMMUNITY TO UNDERSTAND THE FUNCTION OF THE MED13L GENE IN ORDER TO DEVELOP EFFECTIVE TREATMENTS AND A CURE FOR MED13L SYNDROME. INCREASE MEDICAL COMMUNITY AND PUBLIC AWARENESS OF THE COMPLEXITY AND POTENTIAL SEVERITY OF MED13L SYNDROME. PROVIDE EDUCATIONAL AND EMOTIONAL SUPPORT FOR THOSE AFFECTED BY MED13L SYNDROME. RAISE MONEY TO FUND OUR GOALS.

    Expenses $292,840 · Grants $292,840

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Officers and directors · 2024

As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • Nick Seaver

    TREASURER

    Total calculated
    $0
    Hours/week
    5

  • Kathleen Barry Boychuck

    CHAIR

    Total calculated
    $0
    Hours/week
    10

  • Vanessa Dias

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    10

  • Jennifer Robertson

    SECRETARY

    Total calculated
    $0
    Hours/week
    10

  • Inon Shampanier

    TRUSTEE AS OF SEPT 2024

    Total calculated
    $0
    Hours/week
    5

  • Kelly Sexton

    TRUSTEE UNTIL SEPT 2024

    Total calculated
    $0
    Hours/week
    0

  • Kim Sokorai

    TRUSTEE UNTIL SEPT 2024

    Total calculated
    $0
    Hours/week
    0

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. Earlier years are each on their own filing page.

Filings

  • 2024
    Revenue
    $188,215
    Expenses
    $348,032
    Contributions
    $170,834
    Grants paid
    $292,840
  • 2023
    Revenue
    $608,940
    Expenses
    $201,203
    Contributions
    $602,092
    Grants paid
    $163,258
  • 2022
    Revenue
    $323,934
    Expenses
    $41,607
    Contributions
    $323,934
    Grants paid
    $0

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

  • 2021 · 990-EZ

    Revenue
    $99,263
    Expenses
    $52,772
    Assets (EOY)
    $49,724

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all.

Form 990-N e-Postcard, tax year 2021

Tax period
1 January 2021 to 31 December 2021
Principal officer
Kelly Sexton
Mailing address
17 Timber DriveBarrington NJ 08007
Website
www.med13l.org

As filed, from the IRS e-Postcard file of 2 November 2026. The IRS publishes only each organization's most recent postcard, so earlier years are not shown. A 990-N carries no financial detail. The postcard also gives the principal officer's address, which is not shown here.

Grants made

  • TRANSCRIPTA BIO INC (FKA RAREBASE PBC)

    $164,650

    2024 BIOMARKER DISCOVERY PROJECT AND DRUG DISCOVERY PROJECT USING RAREBASE (NOW TRANSCRIPTA BIO) FUNCTION PLATFORM

  • RAREBASE PBC

    $86,000

    2023 BIOMARKER DISCOVERY PROJECT AND DRUG DISCOVERY PROJECT USING RAREBASE FUNCTION PLATFORM

  • ROWAN UNIVERSITY FOUNDATION INC

    $76,984

    2024 UNDERSTANDING OF THE ROLE MITOCHONDRIAL DYSFUNCTION PLAYS IN THE PATHOOGY ASSOCIATED WITH MED13L SYNDROME MUTATIONS

  • VANDERBILT UNIVERSITY MEDICAL CENTER

    $46,000

    2024 EXPLORING THE IMPACT OF DISEASE MODIFYING COMPOUNDS IN MED13L PATIENT DERIVE

  • STATE UNIVERSITY OF IOWA

    $38,333

    2023 PHYSIOLOGICAL AND MOLECULAR SIGNATURES IN MOUSE MODELS OF MED13L SYNDROME

  • COMBINED BRAIN

    $25,787

    2023 STRATEGIC RESEARCH PLAN AND BIOSPECIMEN COLLECTION

  • PACIFIC IMMUNOLOGY

    $7,143

    2023 PRODUCTION OF ANTIBODY FOR MED13L

  • COMBINED BRAIN

    $4,781

    2024 STRATEGIC RESEARCH PLAN AND BIOSPECIMEN COLLECTION

Where these grants went next →

Grants received

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 13 October 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.

What this page reflects

The registration facts above come from the IRS Business Master File published 13 October 2026 and read 1 November 2026, for every organization at once. Returns through tax year 2024, the newest we have parsed for this organization.