Skip to content
Nonprofiteer
← MED13L FOUNDATION INC

Form 990 for tax year 2024

Filed by MED13L FOUNDATION INC.

Totals

Total revenue
$188,215
Total expenses
$348,032
Contributions and grants received
$170,834
Grants paid
$292,840
Program service revenue
$0
Investment income
$26,603
Other revenue
-$9,222
Total assets, end of year
$579,971
Total liabilities, end of year
$0
Net assets or fund balances, end of year
$579,971
Program services expenses (Part IX)
$292,840
Management and general expenses
$9,024
Fundraising expenses
$46,168
Program service expenses (Part III)
$292,840

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

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1c · Fundraising events

    $40,885

  • 1f · All other contributions, gifts and grants

    $129,949

  • 3 · Investment income

    total $26,603 · excluded $26,603

  • 8a · Fundraising events: gross income

    $0

  • 8a · Fundraising events: contributions included on line 1c

    $40,885

  • 8b · Fundraising events: direct expenses

    $9,222

  • 8c · Net income from fundraising events

    total -$9,222 · excluded -$9,222

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $292,840 · program services $292,840

  • 11c · Fees: accounting

    total $1,410 · management and general $1,410

  • 11e · Fees: professional fundraising services

    total $20,200 · fundraising $20,200

  • 11g · Fees: other

    total $15,785 · management and general $600 · fundraising $15,185

  • 12 · Advertising and promotion

    total $486 · fundraising $486

  • 13 · Office expenses

    total $283 · management and general $283

  • 14 · Information technology

    total $11,775 · management and general $1,615 · fundraising $10,160

  • 17 · Travel

    total $2,543 · management and general $2,543

  • 23 · Insurance

    total $1,405 · management and general $1,405

  • 24a · Other expenses: MEMBERSHIPS AND SUBSCRI

    total $863 · management and general $863

  • 24b · Other expenses: LICENSES AND PERMITS

    total $305 · management and general $305

  • 24c · Other expenses: SHIPPING AND POSTAGE

    total $137 · fundraising $137

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $49,357 · end of year $116,979

  • 11 · Investments: publicly traded securities

    beginning of year $690,431 · end of year $462,992

  • 27 · Net assets without donor restrictions

    beginning of year $739,788 · end of year $579,971

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.

Listed in Part VII

  • 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.

Grants on this return

  • TRANSCRIPTA BIO INC (FKA RAREBASE PBC)

    $164,650

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

  • ROWAN UNIVERSITY FOUNDATION INC

    $76,984

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

  • VANDERBILT UNIVERSITY MEDICAL CENTER

    $46,000

    EXPLORING THE IMPACT OF DISEASE MODIFYING COMPOUNDS IN MED13L PATIENT DERIVE

  • COMBINED BRAIN

    $4,781

    STRATEGIC RESEARCH PLAN AND BIOSPECIMEN COLLECTION

Provenance

Return type
form_990
Tax year
2024
Filed
10 November 2025
IRS schema version
2024v5.2
Source object
202533169349300613

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

The source document this was parsed from is served over the API, which is where bulk and document access live.