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CACNA1A Foundation, Inc.

Mission

The mission of the CACNA1A Foundation is to find specific treatment options and a cure for CACNA1A patients by building a collaborative network of patients, families, clinicians and scientists that will work together to raise awareness and accelerate the understanding, diagnosis and treatment of CACNA1A-related disorders.

Vision

A world free of the debilitating effects of CACNA1A-related disorders

Goals

1.In 2021, the CACNA1A Foundation received a CZI Rare As One grant to build capacity. Since then, we’ve hired a Development Director and are now hiring our first full-time Executive Director in 2025. These investments mark a shift from a founder-led model to professional leadership, ensuring long-term sustainability and greater impact.
2.We’ve expanded our educational offerings to help families better understand CACNA1A-related disorders and navigate care. We’re also developing a comprehensive new patient toolkit to provide accessible, up-to-date information and connect newly diagnosed families with resources and support.
3.We’re expanding our advocacy by attending major professional conferences, including the American Epilepsy Society meeting, to raise awareness among clinicians and researchers. These efforts help drive earlier diagnosis, increase engagement in research, and amplify the needs of our rare disease community.

Norwalk CT | EIN: 84-4985747

Profile managed by nonprofit | Is this your nonprofit?

501(c)(3) organization

31 POINT ROAD,
Norwalk CT 06854

https://www.cacna1a.org/

203-969-6552

CACNA1A Foundation, Inc.

Mission

Vision

A world free of the debilitating effects of CACNA1A-related disorders

Goals

1.In 2021, the CACNA1A Foundation received a CZI Rare As One grant to build capacity. Since then, we’ve hired a Development Director and are now hiring our first full-time Executive Director in 2025. These investments mark a shift from a founder-led model to professional leadership, ensuring long-term sustainability and greater impact.
2.We’ve expanded our educational offerings to help families better understand CACNA1A-related disorders and navigate care. We’re also developing a comprehensive new patient toolkit to provide accessible, up-to-date information and connect newly diagnosed families with resources and support.
3.We’re expanding our advocacy by attending major professional conferences, including the American Epilepsy Society meeting, to raise awareness among clinicians and researchers. These efforts help drive earlier diagnosis, increase engagement in research, and amplify the needs of our rare disease community.

Norwalk CT | EIN: 84-4985747

Profile managed by nonprofit | Is this your nonprofit?

501(c)(3) organization

31 POINT ROAD,
Norwalk CT 06854

https://www.cacna1a.org/

203-969-6552

Beacon Report

Great
Good
Needs Improvement
Poor
Incomplete
Additional Information

Website Reported on Tax Form:Yes

SCORE100%

No Material Diversion of Assets:Yes

SCORE100%

Records Retention Policy:Yes

SCORE100%

Tax Form Disclosed on Website:Yes

SCORE100%

Accountability Panel
Score	Metric
100%	Website Reported on Tax Form:Yes
100%	No Material Diversion of Assets:Yes
100%	Records Retention Policy:Yes
100%	Tax Form Disclosed on Website:Yes

Science behind the numbers

Nonprofit Resources

Nonprofit Resources

CACNA1A Foundation, Inc.

Mission

Vision

Goals

CACNA1A Foundation, Inc.

Mission

Vision

Goals

Beacon Report