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← GLOBAL FOUNDATION FOR PEROXISOMAL DISORDERS

Form 990 for tax year 2022

Filed by GLOBAL FOUNDATION FOR PEROXISOMAL DISORDERS.

Totals

Total revenue
$815,854
Total expenses
$1,150,024
Contributions and grants received
$799,711
Grants paid
$31,544
Program service revenue
$0
Investment income
$4,748
Other revenue
$11,395
Total assets, end of year
$851,736
Total liabilities, end of year
$47,958
Net assets or fund balances, end of year
$803,778
Program services expenses (Part IX)
$900,885
Management and general expenses
$115,723
Fundraising expenses
$133,416
Program service expenses (Part III)
$900,885

Program services were 78.3% 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

    $362,706

  • 1f · All other contributions, gifts and grants

    $437,005

  • 1g · Noncash contributions included above

    $30,652

  • 3 · Investment income

    total $4,748 · excluded $4,748

  • 8a · Fundraising events: gross income

    $109,891

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

    $362,706

  • 8b · Fundraising events: direct expenses

    $104,037

  • 8c · Net income from fundraising events

    total $5,854 · excluded $5,854

  • 10a · Gross sales of inventory

    $6,617

  • 10b · Cost of goods sold

    $2,895

  • 10c · Net income from sales of inventory

    total $3,722 · related or exempt $3,722

  • 11a · Other revenue: OTHER INCOME

    total $1,819 · related or exempt $1,819

  • 11e · Other revenue, total

    $1,819

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $20,000 · program services $20,000

  • 2 · Grants to domestic individuals

    total $11,544 · program services $11,544

  • 5 · Compensation of officers, directors and key employees

    total $88,237 · program services $75,001 · management and general $8,824 · fundraising $4,412

  • 7 · Other salaries and wages

    total $7,342 · program services $2,605 · management and general $4,584 · fundraising $153

  • 9 · Other employee benefits

    total $210 · program services $171 · management and general $29 · fundraising $10

  • 10 · Payroll taxes

    total $6,617 · program services $5,373 · management and general $928 · fundraising $316

  • 11f · Fees: investment management

    total $357 · management and general $357

  • 11g · Fees: other

    total $395,437 · program services $303,690 · management and general $61,244 · fundraising $30,503

  • 12 · Advertising and promotion

    total $40,980 · program services $153 · management and general $8,806 · fundraising $32,021

  • 13 · Office expenses

    total $58,694 · program services $49,078 · management and general $2,086 · fundraising $7,530

  • 14 · Information technology

    total $66,384 · program services $59,045 · management and general $1,842 · fundraising $5,497

  • 16 · Occupancy

    total $20,022 · program services $15,919 · management and general $1,742 · fundraising $2,361

  • 17 · Travel

    total $366,656 · program services $343,198 · management and general $20,667 · fundraising $2,791

  • 19 · Conferences, conventions and meetings

    total $5,531 · program services $5,181 · management and general $350

  • 22 · Depreciation, depletion and amortization

    total $1,708 · program services $1,384 · management and general $188 · fundraising $136

  • 23 · Insurance

    total $7,249 · program services $5,875 · management and general $797 · fundraising $577

  • 24a · Other expenses: FUNDRAISING EXPENSE

    total $49,314 · management and general $2,917 · fundraising $46,397

  • 24e · All other expenses

    total $3,742 · program services $2,668 · management and general $362 · fundraising $712

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $458,992 · end of year $163,741

  • 2 · Savings and temporary cash investments

    beginning of year $667,850 · end of year $431,148

  • 3 · Pledges and grants receivable

    end of year $5,000

  • 4 · Accounts receivable

    beginning of year $1,681 · end of year $22,534

  • 8 · Inventories for sale or use

    beginning of year $2,609 · end of year $1,164

  • 9 · Prepaid expenses and deferred charges

    beginning of year $42,786 · end of year $26,973

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

    $14,663

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

    $8,641

  • 10c · Land, buildings and equipment, net

    beginning of year $2,798 · end of year $6,022

  • 12 · Investments: other securities

    end of year $195,154

  • 17 · Accounts payable and accrued expenses

    beginning of year $32,922 · end of year $47,958

  • 27 · Net assets without donor restrictions

    beginning of year $784,325 · end of year $372,630

  • 28 · Net assets with donor restrictions

    beginning of year $359,469 · end of year $431,148

Mission and programs · 2022

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.

  • FAMILY SUPPORT PROGRAM: HEALTH LITERACY: THE GFPD IS FOCUSED ON BUILDING HEALTH AND SCIENTIFIC LITERACY FOR PATIENTS AND CAREGIVERS THROUGH A WIDE ARRAY OF COMMUNICATION MECHANISMS. THROUGH A POWERFUL WEBSITE THAT WAS REDESIGNED IN 2022 TO CREATE GREATER EASE OF USE AND ACCESS TO RESOURCES, THE GFPD REACHED HUNDREDS OF FAMILIES WORLDWIDE TO DISSEMINATE INFORMATION INCLUDING THE ONLY PEER-REVIEWED TREATMENT GUIDELINES FOR PEROXISOMAL PATIENTS. ADDITIONALLY, WE HAVE MORE THAN 4,000 FOLLOWERS WORLDWIDE ON SOCIAL MEDIA WHERE MORE THAN HALF OF THE POSTS AND MESSAGING ARE DESIGNED TO EMPOWER CAREGIVERS OF PATIENTS WITH HEALTH INFORMATION AND OTHER TOOLS FOR CLINICAL OUTCOMES. PATIENT SUPPORT:THE GFPD HOSTED A BIENNIAL CONFERENCE IN 2022 FOR 294 PARTICIPANTS COMPRISING FAMILIES, PATIENTS, RESEARCHERS, SCIENTISTS, PHYSICIANS, OTHER CLINICIANS, UNIVERSITY STUDENTS AND FELLOWS, INTERNS AND TRAINED TEAM MEMBERS TO ENGAGE IN FIVE DAYS OF LEARNING, SUPPORTS AND EXCHANGE FOR FAMILIES WITH PEROXISOMAL PATIENTS. THERE WERE MORE THAN 60 SESSIONS FOCUSED ON SCIENCE AND MEDICINE ADVANCEMENTS, CARE PROVISION, MENTAL HEALTH SUPPORTS, AND MORE. ADDITIONALLY, THE CONFERENCE WAS ABLE TO PROVIDE CARE FOR CHILDREN OF VARYING NEEDS THROUGH ITS WARRIOR CAMP MODEL THAT PAIRS UNIVERSITY INTERNS WITH FAMILIES AND CHILDREN. FINALLY, THE GFPD WAS ABLE TO PROVIDE ACCESS TO MORE THAN $100,000 WORTH OF PRO BONO CONSULTATIONS FROM PHYSICIANS, SCIENTISTS, ALLIED HEALTH PROFESSIONALS, ETC. TO FAMILIES FROM AROUND THE WORLD. OTHER ACTIVITIES:THE GFPD HOSTED A NUMBER OF VIRTUAL MEET-UPS, WEBINARS AND SUPPORT GROUPS FOR PARENTS AND CAREGIVERS TO INCREASE HEALTH LITERACY THAT RESULTS IN BETTER CLINICAL OUTCOMES FOR PATIENTS, LINKAGE TO CARE PROVIDERS ACROSS THE COUNTRY, AS WELL AS PROVIDE NECESSARY EMOTIONAL AND BEHAVIORAL SUPPORTS FOR CAREGIVERS AND ASSIST IN ADVOCACY AND POLICY CHANGE FOR RARE DISEASE PATIENTS.

    Expenses $643,285 · Revenue $5,541

  • RESEARCH AND MEDICINE:THE GFPD HAS ESTABLISHED A STRONG COMMITTEE OF PHYSICIANS AND SCIENTISTS AS PART OF OUR MEDICAL AND SCIENTIFIC ADVISORS GROUP. THESE INDIVIDUALS COMPRISE RESEARCHERS, CLINICIANS AND EXPERTS FROM NORTH AMERICA AND EUROPE THAT TREAT AND ASSIST PEROXISOMAL PATIENTS 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.

    Expenses $257,600 · Grants $31,544

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • KELLY DAUER-HUBSCHMITT

    CHAIR

    Total calculated
    $0
    Hours/week
    1

  • DAVID LAPIDUS

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    1

  • BRIAN TIMS CPA

    TREASURER

    Total calculated
    $0
    Hours/week
    0.5

  • MEGHAN MEYERS

    SECRETARY

    Total calculated
    $0
    Hours/week
    0.5

  • CORIN CHAPMAN

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • DENNIS CARLSON

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • CHAD JOHNSON

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • ERICA GOLLE

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • JOSH MATEFFY

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • CHRIS OSTERTAG

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • NATALIE CLOUSE

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • CAROLINA ALFARO

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • KAROLINE BETHEA-JONES

    DIRECTOR

    Total calculated
    $0
    Hours/week
    0.5

  • MELISSA BRYCE

    EXECUTIVE DIRECTOR

    Total calculated
    $88,237
    From this org
    $83,654
    From related orgs
    $4,583
    Other
    $0
    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

Provenance

Return type
form_990
Tax year
2022
Filed
10 November 2023
IRS schema version
2022v5.0
Source object
202303189349302975

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