Public Charity

Moebius Syndrome Foundation

Moebius Syndrome Foundation is a Public Charity headquartered in Denver, CO. Financial data from the 2025 filing: $1.1M revenue, $760K expenses, $2.5M total assets. IRS filings disclose 27 grants awarded by this foundation, totaling roughly $793K.

EIN: 133753992 Denver, CO Public Foundations NTEE: T30 Latest filing: 2025
Total Revenue$1.1M
Total Expenses$760K
Total Assets$2.5M
Grants Given27
Grant Total$793K
Filing Years2021–2025

Mission

The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with moebius syndrome and their families, promote greater awareness and understanding of moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of moebius syndrome and its associated conditions.

Where $100 goes at Moebius Syndrome Foundation

How Moebius Syndrome Foundation divides every $100 it spends, from its own Form 990 filings, averaged across 9 years.

$82 Programs the work itself
$16 Management running the organization
$2 Fundraising raising the next dollar

Inside the $82 for programs

$48
Provide information and support to individuals with Moebius syndrome and their families
59% of program spending
$31
Advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions
37% of program spending
$3
To provide college scholarships to students with Moebius Syndrome
4% of program spending
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Source: Form 990 filings with the IRS, latest fiscal year 2025. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.

Before you apply to Moebius Syndrome Foundation

Often funds new orgs 94% of recent recipients were first-time grantees (2023–2025).

Who to contact, what to include, deadlines, typical grant size and geographic focus are available with membership.

Sample Grants Given

Evanston, IL · 2025
For scientific and/or clinical research on Moebius syndrome
$100,000
The Board of Regents University of Wisconsin
Madison, WI · 2025
For scientific and/or clinical research on Moebius syndrome
$100,000
Stillwater, OK · 2024
Scholarship
$3,000
University of South Florida
Tampa, FL · 2024
Scholarship
$3,000
York, PA · 2024
Scholarship
$3,000

Showing up to 5 of 27 total records — full history available with membership.

Officers & Directors

Board Member Bobby Medow
Board Member Bryn Webb Md
Treasurer Destiny Bachman
Executive Director Jennifer Whitman
Secretary Jon Fisher
Board Member Kathryn Kraus Mcclure Md

Officer compensation and complete director data available with membership.

Top Grant Purposes

Research & Policy
$739,344 9 grants
Education
$54,000 18 grants

Financial Trends

Year Revenue Expenses Assets
2025 $1.1M $760K $2.5M
2024 $338K $283K $2.0M
2023 $458K $599K $1.8M
2022 $358K $520K $1.9M
2021 $1.0M $184K $2.4M

Between 2021 and 2025, reported annual revenue grew from $1.0M to $1.1M (+3%), with total assets most recently reported at $2.5M.

Interactive year-over-year charts and full filing details available with membership.

Grant Geography

Grants from this foundation were reported to recipients in AR, CA, CT, DC, FL, IL, and 4 other states.

ARCACTDCFLILINMAMDMN

Full geographic grant map with state-by-state breakdown available with membership.

See the full picture for Moebius Syndrome Foundation

Complete financials, all 27 grant records, officer compensation, year-over-year trend charts, a geographic grant map, and data exports — across 880,000+ organizations.

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