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Nonprofiteer
← CACNA1A FOUNDATION INC

Form 990 for tax year 2024

Filed by CACNA1A FOUNDATION INC.

Totals

Total revenue
$465,614
Total expenses
$540,157
Contributions and grants received
$413,016
Grants paid
$91,155
Program service revenue
$15,000
Investment income
$8,897
Other revenue
$28,701
Total assets, end of year
$726,400
Total liabilities, end of year
$115,810
Net assets or fund balances, end of year
$610,590
Program services expenses (Part IX)
$441,721
Management and general expenses
$20,109
Fundraising expenses
$78,327
Program service expenses (Part III)
$441,721

Program services were 81.8% 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.

  • 1f · All other contributions, gifts and grants

    $413,016

  • 2a · Program service revenue: Sponsorships

    total $15,000 · related or exempt $15,000

  • 3 · Investment income

    total $8,897 · excluded $8,897

  • 8c · Net income from fundraising events

    total $0

  • 11a · Other revenue: Other Revenue

    total $28,701 · related or exempt $28,701

  • 11e · Other revenue, total

    $28,701

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $82,885 · program services $82,885

  • 3 · Grants to foreign organizations and individuals

    total $8,270 · program services $8,270

  • 11b · Fees: legal

    total $9,801 · program services $6,533 · management and general $458 · fundraising $2,810

  • 11c · Fees: accounting

    total $8,400 · program services $5,598 · management and general $393 · fundraising $2,409

  • 11g · Fees: other

    total $168,667 · program services $112,422 · management and general $7,882 · fundraising $48,363

  • 12 · Advertising and promotion

    total $10,816 · program services $3,562 · fundraising $7,254

  • 13 · Office expenses

    total $15,202 · program services $1,316 · management and general $1,689 · fundraising $12,197

  • 14 · Information technology

    total $21,114 · program services $10,577 · management and general $5,947 · fundraising $4,590

  • 17 · Travel

    total $5,080 · program services $4,005 · management and general $371 · fundraising $704

  • 19 · Conferences, conventions and meetings

    total $166,297 · program services $166,297

  • 23 · Insurance

    total $3,294 · management and general $3,294

  • 24a · Other expenses: Miscellaneous

    total $40,331 · program services $40,256 · management and general $75

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $842,640 · end of year $711,278

  • 3 · Pledges and grants receivable

    beginning of year $20,688 · end of year $15,122

  • 17 · Accounts payable and accrued expenses

    beginning of year $25,695 · end of year $3,859

  • 18 · Grants payable

    beginning of year $152,500 · end of year $111,951

  • 27 · Net assets without donor restrictions

    beginning of year $512,627 · end of year $610,590

  • 28 · Net assets with donor restrictions

    beginning of year $172,506

Mission and programs · 2024

Mission

To find specific treatment options and a cure for CACNA1A patients. (See Schedule O for full mission)

  • In 2024, the CACNA1A Foundation launched a 10-year Clinical Assessments Research Study to establish baseline measurements for clinical trials and advance treatment development. We funded multiple research projects, including novel gene therapy strategies, small molecule screening, and antibody validation, while also expanding our Research Network with new working groups. Additionally, our team published a key paper outlining a pathway to clinical trials for CACNA1A-related epilepsies.

    Expenses $247,475 · Grants $91,155

  • On July 18, 2024, the CACNA1A Foundation hosted its third annual Research Roundtable, bringing together 50 researchers, clinicians, industry representatives, and NINDS grant managers to advance clinical trials for CACNA1A-related disorders. We also held our second hybrid Creating Connections Community Conference, uniting over 200 participants, including families and experts, to share research updates and support. This event remains a vital space for connection, education, and empowerment in the rare disease community.

    Expenses $159,643 · Revenue $15,000

  • The CACNA1A Foundation raised awareness by participating in national and international events, including Global Genes, the American Epilepsy Society, and Rare Disease Day at the Broad Institute. We hosted 22 virtual meetups for families and launched the Cure Club to boost research participation through personalized outreach. Additionally, we advocated for a unique ICD-10 code for CACNA1A-related neurodevelopmental disorders at the ICD-10 Coordination and Maintenance Committee Meeting.

    Expenses $34,603

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

Listed in Part VII

  • Allison Buchner

    Director

    Total calculated
    $0
    Hours/week
    5

  • Hala Mirza

    Director

    Total calculated
    $0
    Hours/week
    2

  • Sarah Greathouse

    Director

    Total calculated
    $0
    Hours/week
    5

  • Deborah Ondrasik MD

    Director

    Total calculated
    $0
    Hours/week
    5

  • Michael Strupp

    Director

    Total calculated
    $0
    Hours/week
    5

  • Lisa Manaster

    President

    Total calculated
    $0
    Hours/week
    40

  • Sunitha Malepati

    Vice President & Treasurer

    Total calculated
    $0
    Hours/week
    40

  • Amy Junge

    Secretary

    Total calculated
    $0
    Hours/week
    10

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
2024
Filed
27 June 2025
IRS schema version
2024v5.1
Source object
202511839349300911

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