Moebius Syndrome Foundation
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.
Moebius Syndrome Foundation at a glance
In short: Moebius Syndrome Foundation gave $200K across 2 grants in 2025 (avg $100K), mostly in Wisconsin. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $200,000
- +852.4% vs 2024
- Grants made (2025)
- 2
- -71.4% vs 2024
- Average grant
- $100,000
- +3233.3% vs 2024
- Median grant
- $100,000
- Total assets
- $2,539,041
- +28.3% vs 2024
- Primary geography
- Wisconsin (50% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
How to apply to Moebius Syndrome Foundation
- Next open deadline
- December 31, 2026 (Post-Secondary Educational Scholarship)
Open Grants
2 open opportunities from Moebius Syndrome Foundation
Who Moebius Syndrome Foundation funds
How this funder distributes its grants
Top Recipients
Top 2 recipients in 2025
The largest 2025 recipient was The Board of Regents University of Wisconsin ($100K). Together the top 2 received $200K.
Grant Size Distribution
21 grants across all recorded years
The most common grant size was under $50K: 18 grants of 21 (86%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 2 itemized grants.
States
Cities
How Moebius Syndrome Foundation gives
- Giving grew 1567% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $12K (2022) to $200K (2025). In 2025 it made 2 grants totaling $200K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| The Board of Regents University of Wisconsin Madison, WI | For scientific and/or clinical research on Moebius syndrome | $100,000 |
| Northwestern University Evanston, IL | For scientific and/or clinical research on Moebius syndrome | $100,000 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $2,539,041 | $1,072,751 | $760,403 | $200,000 | 2 | $67,729 |
| 2024 | $1,978,268 | $338,157 | $283,083 | $21,000 | 7 | $56,102 |
| 2023 | $1,833,572 | $458,300 | $599,259 | $91,000 | 8 | $68,250 |
| 2022 | $1,898,826 | $358,125 | $519,527 | $12,000 | 4 | $47,724 |
| 2021 | $2,393,833 | $1,037,936 | $183,742 | — | — | $49,048 |
| 2020 | $1,589,005 | $104,435 | $600,241 | $184,344 | 2 | $38,110 |
About Moebius Syndrome Foundation
Based on IRS filings
Moebius Syndrome Foundation is a public charity, based in Denver, CO. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $2.5M in total assets. In 2025, it awarded 2 grants totaling $200K. Net investment income was $68K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Moebius Syndrome Foundation is led by Jennifer Whitman, Executive Director on every filing since 2022; 1 of 12 officers listed in 2025 is compensated.
Officers on the 2025 filing
Jennifer Whitman
Executive Director
On filings since 2022
50 hrs/week
$83K (2022) → $95K (2025)
Rebecca Maher
President
Secretary → President, 2024
On filings since 2020
10 hrs/week
No compensation reported
Bryn Webb MD
Board Member
On filings since 2020
2 hrs/week
No compensation reported
Steven Maldonado
Vice President
Board Member → Vice President, 2021
On filings since 2020
2 hrs/week
No compensation reported
Destiny Bachman
Treasurer
Board Member → Treasurer, 2024
On filings since 2021
10 hrs/week
No compensation reported
Jon Fisher
Secretary
Board Member → Secretary, 2024
On filings since 2021
10 hrs/week
No compensation reported
KiOwana Phillips
Board Member
On filings since 2021
2 hrs/week
No compensation reported
Bobby Medow
Board Member
New on the 2025 filing
2 hrs/week
No compensation reported
Kathryn Kraus McClure MD
Board Member
New on the 2025 filing
2 hrs/week
No compensation reported
Lucia Santistevan MD
Board Member
New on the 2025 filing
2 hrs/week
No compensation reported
Michael Mendenhall Esq.
Board Member
New on the 2025 filing
2 hrs/week
No compensation reported
Tara Lewis PhD
Board Member
New on the 2025 filing
2 hrs/week
No compensation reported
Former officers (9)
- Former: Jacob Licht (2020–2024) — Past President
- Former: Vicky McCarrell (2020–2024) — Board Member
- Former: Austin Halls (2022–2024) — Board Member
- Former: Kathryn Kraus (2022–2024) — Board Member
- Former: Monica Woodall (2020–2023) — Board Member
- Former: Kelsey Ferrill (2020–2021) — Board Member
- Former: Nicole Zeitler (2020–2021) — Board Member
- Former: Kathyrn Kraus (2021) — Board Member
- Former: Kevin Smant (2020) — Vice President
Data from IRS Form 990 filings, 2020–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $95K, to Jennifer Whitman (Executive Director).
Frequently asked questions about Moebius Syndrome Foundation
How much does Moebius Syndrome Foundation give each year?
Moebius Syndrome Foundation gave $200K across 2 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $21K across 7 grants.
How large is Moebius Syndrome Foundation?
Moebius Syndrome Foundation reported $2.5M in total assets on its 2025 IRS Form 990. Its revenue that year was $1.1M.
Where does Moebius Syndrome Foundation operate?
Moebius Syndrome Foundation has awarded grants in Arkansas, California, Connecticut, District of Columbia, Florida, Illinois, Indiana, Maryland, Minnesota, Mississippi, North Carolina, Nebraska, New York, Ohio, Oklahoma, Oregon, Pennsylvania, Wisconsin.
What is Moebius Syndrome Foundation's EIN?
Moebius Syndrome Foundation's EIN (Employer Identification Number) is 13-3753992. IRS Form 990 filing data is available on this page for 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(5)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS November 10, 2021)
- Updated Form 990 for fiscal year 2023 (received by the IRS May 7, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS June 12, 2025)
- Added Form 990 for fiscal year 2025 (received by the IRS July 27, 2026)
- IRS filings on file for fiscal years 2020–2024
Explore Open Grants
Browse active grant opportunities in Moebius Syndrome Foundation's focus areas in our free grants database
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Moebius Syndrome Foundation down — hundreds of funders to go?