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← ASSOCIATION FOR CREATINE DEFICIENCIES

Form 990 for tax year 2023

Filed by ASSOCIATION FOR CREATINE DEFICIENCIES.

Totals

Total revenue
$588,192
Total expenses
$602,613
Contributions and grants received
$574,134
Grants paid
$183,000
Program service revenue
$5,000
Investment income
$2,487
Other revenue
$6,571
Total assets, end of year
$674,679
Total liabilities, end of year
$26,722
Net assets or fund balances, end of year
$647,957
Program services expenses (Part IX)
$493,631
Management and general expenses
$69,740
Fundraising expenses
$39,242
Program service expenses (Part III)
$493,631

Program services were 81.9% 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

    $40,130

  • 1f · All other contributions, gifts and grants

    $534,004

  • 1g · Noncash contributions included above

    $16,110

  • 2a · Program service revenue: Conference

    total $5,000 · related or exempt $5,000

  • 3 · Investment income

    total $2,487 · excluded $2,487

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

    $40,130

  • 11a · Other revenue: Other

    total $6,571 · related or exempt $6,571

  • 11e · Other revenue, total

    $6,571

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $150,000 · program services $150,000

  • 3 · Grants to foreign organizations and individuals

    total $33,000 · program services $33,000

  • 5 · Compensation of officers, directors and key employees

    total $105,000 · program services $74,131 · management and general $15,366 · fundraising $15,503

  • 7 · Other salaries and wages

    total $35,766 · program services $25,251 · management and general $5,234 · fundraising $5,281

  • 10 · Payroll taxes

    total $10,782 · program services $7,612 · management and general $1,578 · fundraising $1,592

  • 11b · Fees: legal

    total $18,943 · program services $18,943

  • 11c · Fees: accounting

    total $26,428 · program services $20,706 · management and general $5,688 · fundraising $34

  • 11g · Fees: other

    total $128,940 · program services $96,921 · management and general $31,831 · fundraising $188

  • 12 · Advertising and promotion

    total $13,182 · program services $1,805 · management and general $1,200 · fundraising $10,177

  • 13 · Office expenses

    total $17,100 · program services $9,484 · management and general $2,625 · fundraising $4,991

  • 14 · Information technology

    total $4,262 · program services $1,386 · management and general $1,530 · fundraising $1,346

  • 16 · Occupancy

    total $2,100 · program services $2,100

  • 17 · Travel

    total $25,548 · program services $23,198 · management and general $2,276 · fundraising $74

  • 19 · Conferences, conventions and meetings

    total $9,370 · program services $8,940 · management and general $374 · fundraising $56

  • 23 · Insurance

    total $2,049 · program services $11 · management and general $2,038

  • 24a · Other expenses: Other

    total $20,143 · program services $20,143

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $509,760 · end of year $385,706

  • 3 · Pledges and grants receivable

    beginning of year $109,689 · end of year $148,265

  • 9 · Prepaid expenses and deferred charges

    beginning of year $1,153 · end of year $3,118

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

    $67,905

  • 10c · Land, buildings and equipment, net

    end of year $67,905

  • 11 · Investments: publicly traded securities

    beginning of year $64,772 · end of year $69,685

  • 17 · Accounts payable and accrued expenses

    beginning of year $25,423 · end of year $26,722

  • 27 · Net assets without donor restrictions

    beginning of year $358,386 · end of year $480,600

  • 28 · Net assets with donor restrictions

    beginning of year $301,565 · end of year $167,357

Mission and programs · 2023

Mission

To promote and fund medial research for treatments and cures, provide patient, family, and public education, and advocate for early intervention through newborn screening for Cerebral Creatine Deficiency Syndromes (CCDS).

  • Providing accurate and up to date information through attendance at Medical & Scientific conferences, maintaining informational website, hosting CCDS conference and distributing recordings of talks to accelerate knowledge of creatine deficiencies and related research. Advocating for increased adoption of newborn screening. Supporting CCDS caregivers with webinars, opportunities to engage with researchers, and a structured virtual support group.Supporting research through fellowship grants and maintenance of a patient registry and natural history platform. Co-supporting research and patient communities through joint webinars, quarterly newsletters, online resources, etc.

    Expenses $493,631 · Grants $183,000 · Revenue $5,000

As filed on the 2023 return.

Listed in Part VII

  • Heidi Wallis

    Executive Director

    Total calculated
    $105,000
    From this org
    $105,000
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

  • Mikelle Law

    Director of Compliance

    Total calculated
    $0
    Hours/week
    10

  • Kim Tuminello

    Director of Advocacy

    Total calculated
    $0
    Hours/week
    10

  • Erin Coller

    Director of Comm

    Total calculated
    $0
    Hours/week
    10

  • Randy Allen

    Vice Chair

    Total calculated
    $0
    Hours/week
    10

  • Daniel Coller

    Board Chair

    Total calculated
    $0
    Hours/week
    10

  • Celeste Graham

    Director of Education

    Total calculated
    $0
    Hours/week
    5

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
2023
Filed
14 October 2024
IRS schema version
2023v5.1
Source object
202402899349301900

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