Grantmaking public charityEIN 844985747

CACNA1A Foundation

Norwalk, CT 06854

Total Assets

$726K

FY 2024

Annual Giving

$72K

FY 2024

Grants Made

3

FY 2024

Avg Grant

$24K

FY 2024

Grant Range

Typical

Deadlines

Applications

Programs & Activities

Program 1

$160K

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.

Program 2

$35K

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.

Focus Areas

Voluntary Health Associations & Medical Disciplines

Financial Snapshot

2024 filing

Total Revenue

$466K

Total Expenses

$540K

Giving Over Time

4 years

Giving over time from 2021 to 2024. Peak $125K in 2023. Hover bars for details.

Total dollars recorded per filing year. Scale adjusts to the foundation's range.

Top Recipients

11 grants

Grant Size Distribution

11 grants

<$10K
1
grants
$10–50K
9
grants
$50–250K
1
grants
$250K–1M
$1–5M
$5M+

Geographic Focus

6 states

New York
$100K
40% of total
Massachusetts
$50K
20% of total
Iowa
$50K
20% of total
Ohio
$28K
11% of total
Pennsylvania
$17K
7% of total
Maryland
$5K
2% of total

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CACNA1A Foundation — Grants, Financials & Contact | Grantivo