Ponte Vedra, FL

ISABELLA FOUNDATION INC

EIN 99-4435144

Health & Wellness Medical Research & Training Children & youth Patients & families

Mission

To advance research, policy and family support for ultra‑rare pediatric neurodegenerative disorders (with an initial focus on BPAN/WDR45) by characterizing early‑onset disease, funding targeted research, and partnering with academic and clinical teams to accelerate treatments.

IRS-recognized 501(c)(3) public charity Contributions are tax-deductible

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About ISABELLA FOUNDATION INC

Isabella Foundation, Inc. (public name: Isa Elaine Foundation) is a Ponte Vedra Beach, Florida nonprofit that focuses on ultra‑rare pediatric neurodegenerative disease, particularly BPAN (WDR45). The organization was incorporated in Florida in 2024 and lists EIN 99‑4435144 on its public materials; its leaders report having filed for federal tax‑exempt recognition while operating a public fundraising and research program.

The foundation centers its work on the clinical characterization of Isabella Elaine Lazzara and on building rapid research collaborations to translate early clinical data into actionable studies that may inform treatments for BPAN and related neurodegenerative diseases. The organization describes a lean, family‑funded operating model and public partnerships with researchers and institutions to move research quickly.

Since launch the foundation has established a public website and outreach presence, assembled a scientific/advisory team, and reported early research funding activity and institutional collaborations in 2024–2025, indicating active donor‑facing operations and program development.

Notable achievements

Florida incorporation (2024)

Registered as Isabella Foundation, Inc. in Florida (incorporation documents and state listing show a Ponte Vedra Beach address; public records indicate formation in 2024).

Public brand and operational launch

Launched the Isa Elaine Foundation public website and outreach (2024–2025), positioning the organization as a donor‑facing entity focused on BPAN research, family support, and policy advocacy; the site lists EIN 99‑4435144 and operational statements.

Reported launch of a research fund (Dec 15, 2025)

The organization reports launching an Isa Elaine Foundation Research Fund to accelerate BPAN research and cites a major gift and institutional collaboration announced in December 2025 to support studies and partnerships with academic researchers.

At a glance

Total assets: $161K
Annual revenue: $200K
Tax status: 501(c)(3)Public charity
EIN: 99-4435144
Location: Ponte Vedra, FL
Website: isaelaine.org
On Mahalo since: May 2026

Financial figures from the IRS Business Master File, the IRS’s registry of tax-exempt organizations.

Recognition

Registered on the Florida Division of Corporations as Isabella Foundation, Inc., confirming state incorporation and a Ponte Vedra Beach principal address.

Public acknowledgement and listing in rare‑disease/nbia resource pages and patient advocacy networks under the Isa Elaine Foundation name, reflecting early recognition within the NBIA/BPAN community.

Active public governance and transparency signals on the organization website (up‑to‑date privacy policy and terms; team and advisory descriptions), indicating ongoing operational activity.

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