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← GLOBAL FOUNDATION FOR PEROXISOMAL DISORDERS

Form 990 for tax year 2023

Filed by GLOBAL FOUNDATION FOR PEROXISOMAL DISORDERS.

Totals

Total revenue
$660,533
Total expenses
$840,138
Contributions and grants received
$643,524
Grants paid
$59,652
Program service revenue
$0
Investment income
$7,267
Other revenue
$9,742
Total assets, end of year
$680,018
Total liabilities, end of year
$39,939
Net assets or fund balances, end of year
$640,079
Program services expenses (Part IX)
$712,345
Management and general expenses
$90,083
Fundraising expenses
$37,710
Program service expenses (Part III)
$712,345

Program services were 84.8% 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

    $274,646

  • 1f · All other contributions, gifts and grants

    $368,878

  • 1g · Noncash contributions included above

    $21,000

  • 3 · Investment income

    total $7,812 · excluded $7,812

  • 7b · Less cost or other basis and sales expenses

    securities $305 · other assets $240

  • 7c · Gain or loss

    securities -$305 · other assets -$240

  • 7d · Net gain or loss

    total -$545 · related or exempt -$240 · excluded -$305

  • 8a · Fundraising events: gross income

    $50,886

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

    $274,646

  • 8b · Fundraising events: direct expenses

    $43,062

  • 8c · Net income from fundraising events

    total $7,824 · excluded $7,824

  • 10a · Gross sales of inventory

    $1,969

  • 10b · Cost of goods sold

    $856

  • 10c · Net income from sales of inventory

    total $1,113 · related or exempt $1,113

  • 11a · Other revenue: OTHER INCOME

    total $805 · related or exempt $805

  • 11e · Other revenue, total

    $805

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $59,652 · program services $59,652

  • 5 · Compensation of officers, directors and key employees

    total $95,836 · program services $81,460 · management and general $9,584 · fundraising $4,792

  • 7 · Other salaries and wages

    total $16,716 · program services $16,716

  • 9 · Other employee benefits

    total $722 · program services $722

  • 10 · Payroll taxes

    total $8,052 · program services $8,052

  • 11a · Fees: management

    total $145,085 · program services $145,085

  • 11c · Fees: accounting

    total $60,197 · program services $36,010 · management and general $16,178 · fundraising $8,009

  • 11f · Fees: investment management

    total $1,014 · management and general $1,014

  • 11g · Fees: other

    total $136,460 · program services $82,091 · management and general $41,143 · fundraising $13,226

  • 12 · Advertising and promotion

    total $2,733 · program services $10 · management and general $587 · fundraising $2,136

  • 13 · Office expenses

    total $90,449 · program services $72,431 · management and general $13,687 · fundraising $4,331

  • 14 · Information technology

    total $30,860 · program services $27,449 · management and general $856 · fundraising $2,555

  • 16 · Occupancy

    total $6,641 · program services $5,280 · management and general $578 · fundraising $783

  • 17 · Travel

    total $81,940 · program services $76,697 · management and general $4,619 · fundraising $624

  • 19 · Conferences, conventions and meetings

    total $9,615 · program services $9,007 · management and general $608

  • 22 · Depreciation, depletion and amortization

    total $3,339 · program services $2,706 · management and general $367 · fundraising $266

  • 23 · Insurance

    total $5,188 · program services $4,205 · management and general $570 · fundraising $413

  • 24a · Other expenses: EDUCATION VIDEOS

    total $61,617 · program services $61,617

  • 24b · Other expenses: IN KIND SUPPLIES

    total $21,000 · program services $21,000

  • 24c · Other expenses: OTHER EXPENSES

    total $3,022 · program services $2,155 · management and general $292 · fundraising $575

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $163,741 · end of year $138,265

  • 2 · Savings and temporary cash investments

    beginning of year $431,148 · end of year $78,956

  • 3 · Pledges and grants receivable

    beginning of year $5,000 · end of year $0

  • 4 · Accounts receivable

    beginning of year $22,534 · end of year $24,076

  • 8 · Inventories for sale or use

    beginning of year $1,164 · end of year $2,161

  • 9 · Prepaid expenses and deferred charges

    beginning of year $26,973 · end of year $40,684

  • 10a · Land, buildings and equipment: cost or other basis

    $20,363

  • 10b · Land, buildings and equipment: accumulated depreciation

    $11,397

  • 10c · Land, buildings and equipment, net

    beginning of year $6,022 · end of year $8,966

  • 11 · Investments: publicly traded securities

    beginning of year $195,154 · end of year $386,910

  • 17 · Accounts payable and accrued expenses

    beginning of year $47,958 · end of year $39,939

  • 27 · Net assets without donor restrictions

    beginning of year $372,630 · end of year $342,559

  • 28 · Net assets with donor restrictions

    beginning of year $431,148 · end of year $297,520

Mission and programs · 2023

Mission

THE MISSION OF THE GLOBAL FOUNDATION FOR PEROXISOMAL DISORDERS IS TO IMPROVE THE LIVES OF INDIVIDUALS WITH PEROXISOMAL DISORDERS BY FUNDING RESEARCH, CHAMPIONING SCIENTIFIC COLLABORATION, AND EMPOWERING FAMILIES AND PROFESSIONALS THROUGH EDUCATIONAL PROGRAMS AND SUPPORT SERVICES.

Activities or mission (Part I)

THE GLOBAL FOUNDATION FOR PEROXISOMAL DISORDERS IS DEDICATED TO IMPROVING THE LIVES OF INDIVIDUALS WITH PEROXISOMAL DISORDERS BY FUNDING RESEARCH, CHAMPIONING SCIENTIFIC COLLABORATION, AND EMPOWERING FAMILIES AND PROFESSIONALS THROUGH EDUCATIONAL PROGRAMS AND SUPPORT SERVICES.

  • EMPOWERING FAMILIESIN 2023, THE GFPD WAS ONE OF ONLY SEVEN ORGANIZATIONS SELECTED BY THE FDA TO PARTICIPATE IN AN EXTERNALLY LED-PATIENT FOCUSED DRUG DEVELOPMENT (EL-PFDD) MEETING THE FOLLOWING YEAR, WHICH WAS THEN SCHEDULED AS PART OF THE 2024 FAMILY AND SCIENTIFIC CONFERENCE. EL-PFDD MEETINGS ALLOW FDA REPRESENTATIVES TO LISTEN TO PATIENTS AND CAREGIVERS ABOUT THEIR PERSPECTIVES ON MEDICAL CONDITIONS LIKE PEROXISOMAL DISORDERS. THESE MEETINGS HAVE A HEAVY EMPHASIS ON THE SYMPTOMS AND THE DAILY IMPACTS, AND PATIENTS SHARE FIRST-HAND WHAT KIND OF TREATMENTS WOULD MOST IMPROVE THEIR QUALITY OF LIFE. IN PREPARATION FOR THIS INCREDIBLE OPPORTUNITY, THE GFPD PLANNED TO HOST THREE FOCUS GROUPS WITH ITS PATIENTS, CAREGIVERS, AND FAMILIES IN 2023 TO SHAPE OUR DISCUSSION WITH THE FDA IN 2024. WITH LIMITED SEATS AVAILABLE IN EACH SESSION, THE NUMBER OF FAMILIES SEEKING TO ACTIVELY PARTICIPATE IN THESE FOCUS GROUPS RESULTED IN THE ADDITION OF A FOURTH GROUP.

    Expenses $308,935 · Revenue $1,678

  • RESEARCH AND MEDICINE:THE GFPD MAINTAINS A STRONG COMMITTEE OF PHYSICIANS AND SCIENTISTS ON OUR MEDICAL AND SCIENTIFIC ADVISORY BOARD. THESE INDIVIDUALS COMPRISE RESEARCHERS, CLINICIANS AND EXPERTS FROM NORTH AMERICA AND EUROPE THAT TREAT AND ASSIST PATIENTS WITH PEROXISOMAL DISORDERS THROUGH CLINICAL MEDICINE AND RESEARCH. THE GFPD HAS AWARDED A NUMBER OF GRANTS FOR FURTHER RESEARCH INCLUDING NATURAL HISTORY STUDY, MOUSE MODEL RESEARCH AND ACCESS TO GENETIC COUNSELING AND INFORMATION. PRIMARY RESEARCH PARTNERS INCLUDE MCGILL UNIVERSITY, BAYLOR COLLEGE OF MEDICINE, UNIVERSITY OF SOUTHERN CALIFORNIA, UNIVERSITY OF AMSTERDAM, THE KENNEDY KRIEGER INSTITUTE AND MONTCLAIR STATE UNIVERSITY. ADDITIONALLY, THE GFPD HAS CLINICAL ADVISORS FROM A NUMBER OF CHILDREN'S HOSPITALS THROUGHOUT NORTH AMERICA. TO FURTHER GFPD AWARENESS AND NETWORKING, REPRESENTATIVES HELD MEETINGS WITH THE NATIONAL ORGANIZATION FOR RARE DISORDERS, THE AMERICAN COLLEGE OF MEDICAL GENETICS, THE NOTRE DAME RARE DISEASE SYMPOSIUM, THE WORLD ORPHAN DRUG CONGRESS, AND THE AMERICAN ASSOCIATION FOR THE STUDY OF LIVER DISEASE

    Expenses $268,894 · Grants $59,652

  • ADVOCACYTHE GFPD HOSTED A LARGE CONTINGENT OF FAMILIES AND REPRESENTATIVES IN WASHINGTON DC FOR RARE DISEASE WEEK, MANY OF WHOM SPOKE ON CAPITOL HILL WITH THEIR RESPECTIVE STATE LEGISLATORS. THROUGHOUT THE YEAR, THE GFPD ALSO HOSTED OVER 30 VIRTUAL MEET-UPS, WEBINARS AND SUPPORT GROUPS FOR PARENTS AND CAREGIVERS. THESE VIRTUAL EVENTS INCREASE HEALTH LITERACY AND RESULT IN BETTER CLINICAL OUTCOMES FOR PATIENTS, LINKAGE TO CARE PROVIDERS ACROSS THE COUNTRY. OUR VIRTUAL EVENTS ALSO PROVIDE NECESSARY EMOTIONAL AND BEHAVIORAL SUPPORTS FOR CAREGIVERS AND ASSIST IN ADVOCACY AND POLICY CHANGE FOR RARE DISEASE PATIENTS.

    Expenses $94,276

  • SCIENTIFIC COLLABORATIONTHE GFPD HAS PARTNERED WITH OKLAHOMA STATE UNIVERSITY TO IMPLEMENT A TELEECHO PROGRAM FOCUSED ON PEROXISOMAL DISORDERS AND RARE DISEASES. THIS THREE-YEAR PILOT PROGRAM WILL HELP BRIDGE COMMUNICATIONS BETWEEN PATIENT FAMILIES AND CAREGIVERS WITH SCIENTISTS, RESEARCHERS, AND MEDICAL PROFESSIONALS, AS WELL AS PARAPROFESSIONALS, IN ORDER TO STRENGTHEN NETWORK SUPPORTS AND IMPROVE PATIENT HEALTH OUTCOMES. THE ECHO MODEL CREATES A VIRTUAL COMMUNITY WHERE SPECIALISTS, RESEARCHERS, AND MEDICAL PROFESSIONALS FROM AROUND THE WORLD ENGAGE IN DISCUSSIONS ABOUT SPECIFIC MEDICAL CASES AND OFFER FEEDBACK. EXPERT KNOWLEDGE AND BEST PRACTICES ARE MADE ACCESSIBLE TO COMMUNITY HEALTH CARE PROVIDERS TO INCORPORATE INTO THEIR PRACTICES REGARDLESS OF WHERE THEY ARE LOCATED. THE ECHO MODEL DISSEMINATES EXPERT KNOWLEDGE, EMPOWERING PRACTITIONERS, PATIENTS, AND THEIR FAMILIES THROUGH OPTIMAL HEALTHCARE.

    Expenses $40,240

As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Chris Ostertag

    CHAIR

    Total calculated
    $0
    Hours/week
    1

  • Ryan Maple

    VICE CHAIR, TREASURER

    Total calculated
    $0
    Hours/week
    1

  • Chad Johnson

    SECRETARY

    Total calculated
    $0
    Hours/week
    1

  • Andrew Longenecker

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Brian Tims CPA

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Charina Ramirez

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Christine Quinn

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Corin Chapman

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Dan Burns

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • David Lapidus

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Isabella Pina

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Julie Gacnik

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Kelly Dauer-Hubschmitt

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Kim Martinelli

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Lauren Draper

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Madeleine Corrigan

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Meghan Meyers

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Natalie Clouse

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Sara Kear

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • Melissa Bryce

    EXECUTIVE DIRECTOR

    Total calculated
    $95,836
    From this org
    $85,000
    From related orgs
    $0
    Other
    $10,836
    Hours/week
    40

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

  • KENNEDY KRIEGER UNIVERSITY

    $25,000

    GENERAL FUND

  • MONTCLAIR STATE UNIVERSITY

    $21,710

    GENERAL FUND

  • OKLAHOMA STATE UNIVERSITY

    $12,942

    GENERAL FUND

Related organizations on this return

Schedule R Part II: tax-exempt organizations related to the filer by control. It does not record shared board members or money.

  • HUES FOR HOPE

    501(C)(3) · INSPIRE JOY IN THE LIVES OF FAMILIES FACING RARE DISEASES THROUGH ART · OK

Provenance

Return type
form_990
Tax year
2023
Filed
6 November 2024
IRS schema version
2023v5.1
Source object
202443129349302189

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