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CACNA1A FOUNDATION INC

EIN 84-4985747 NORWALK, CT

Largest nonprofits in Connecticut

Revenue 2024
$465,614
Expenses 2024
$540,157

Program services were 81.8% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
NTEE code
G20
Classification
1200
Street
31 POINT RD

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

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.

Officers and directors · 2024

As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • 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. Earlier years are each on their own filing page.

Filings

  • 2024
    Revenue
    $465,614
    Expenses
    $540,157
    Contributions
    $413,016
    Grants paid
    $91,155
  • 2023
    Revenue
    $385,860
    Expenses
    $453,703
    Contributions
    $385,860
    Grants paid
    $174,996
  • 2022
    Revenue
    $343,299
    Expenses
    $403,405
    Contributions
    $343,299
    Grants paid
    $53,237

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

  • 2021 · 990

    Revenue
    $484,663
    Expenses
    $168,599
    Assets (EOY)
    $488,082

  • 2020 · 990-EZ

    Revenue
    $193,025
    Expenses
    $21,007
    Assets (EOY)
    $172,018

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all.

Grants made

Where these grants went next →

Grants received

The 10 largest by cash amount. The API serves every itemized grant.

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 13 October 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.

What this page reflects

The registration facts above come from the IRS Business Master File published 13 October 2026 and read 1 November 2026, for every organization at once. Returns through tax year 2024, the newest we have parsed for this organization.