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US nonprofit · EIN 133753992 · Denver, COiSource and licenceOrganisation record IRS Exempt Organizations Business Master File (EIN 133753992) - NTEE activity code, address.Board and officers IRS Form 990 annual filings, Part VII (directors, trustees, officers, key employees), read year by year to observe time served.Latest return IRS Form 990 series e-file data - 990 for the year to 31 December 2025: assets, liabilities, staff, website, telephone, pay, grants paid (Schedule I).Finances by year IRS Form 990 e-file data - total revenue and total expenses by tax year.Renewal outlook Computed by Governance Register from the observed filing history and filed revenue. Not a statement that the organisation is recruiting.Deductibility IRS Publication 78 data (code PC), downloaded 18 October 2026.State registers Colorado Secretary of State (17 October 2026).Licence US Federal Government public domain.How we handle data

Moebius Syndrome Foundation

Donations deductible
Revenue
$1.1m
year to 31 December 2025
Expenses
$760k
year to 31 December 2025
Total assets
$2.5m
$105k liabilities
Net assets
$2.4m
assets less liabilities
Directors and trustees
10
6.7 years on average
Staff
2
111 volunteers
Left since last filing
0
no seats appear to have opened
Officers and senior staff
1
named in Part VII
How am I connected?

Moebius Syndrome Foundation's network

10 peoplei10 people on this map.The large node is the subject of this page. Solid lines are what the register itself records (10). Form 990 filings give names without a person identifier; SEC insider filings carry a CIK.

The board

10 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations.Time served and departures are observed across annual filings. Observed time served is a lower bound - a member may have joined before the first year on record. The organisation reported 9 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.
NameRole as filedSinceOn the board
Austin HallsBoard Member2022
4 yrs
Bryn Webb MDBoard Member2018
8 yrs
Destiny BachmanTreasurer2021
5 yrs
Jacob LichtPast President2018
8 yrs
Jon Fisher (also filed as Jon Fisher)Company secretary2021
5 yrs
Kiowana PhillipsBoard Member2021
5 yrs
Kathryn KrausBoard Member2022
4 yrs
Rebecca MaherPresident2018
8 yrs
Steven MaldonadoVice President2018
8 yrs
Vicki McCarrell (also filed as Vicky McCarrell)Board Member2018
8 yrs
Under 5 years5 to 6 years6 years or more

Officers and senior leadership

1 listediNamed in Part VII as officers, key employees or highest-compensated staff - not board members, shown for completeness.
NameTitle as filedOn the filings
Jennifer WhitmanExecutive Directorsince 2022

Pay and hours

year to 31 December 2025iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.
NameTitle as filedHours a weekPay from the organisationRelated organisationsOther
Jennifer WhitmanExecutive Director50$95k
Rebecca MaherPresident10$0
Steven MaldonadoVice President2$0
Destiny BachmanTreasurer10$0
Jon FisherSecretary10$0
Bryn Webb MDBoard Member2$0
KiOwana PhillipsBoard Member2$0
Kathryn Kraus McClure MDBoard Member2$0
Michael Mendenhall EsqBoard Member2$0
Bobby MedowBoard Member2$0
Tara Lewis PhDBoard Member2$0
Lucia Santistevan MDBoard Member2$0

Colorado roster

10 listediOfficers, directors and trustees from the latest filing with the Colorado Secretary of State (document 20253028587). Titles are as filed; some entries are registered agents or custodians of records rather than board members. Source: data.colorado.gov, public domain.
NameTitle as filed
Kiowana PhillipsMember
Destiny BachmanTreasurer
Austin HallsMember
Rebecca MaherPresident
Kathryn KrausMember
Jon FisherMember
Steven MaldonadoVice President
Jennifer Bossen
Jenny WhitmanExecutive Director
Bryn WebbMember

About

Legal name
Moebius Syndrome Foundation
EIN
133753992
Address
1312 17th St PMB 976, Denver, CO, 80202-1508
State
Colorado
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. (as filed on the Form 990)
Activity (NTEE)
T30 Philanthropy, voluntary services and grantmaking
IRS classification
501(c)03 (tax-exempt under section 501(c)(3) where shown)
Classified purpose
Philanthropy, Voluntarism & Grantmaking Foundations
Size band
6 (IRS master file code)
Formed
1994
Principal officer
Rebecca Maher (as named on the Form 990)
IRS ruling date
1 September 1994
Status
Code 01 (unconditional exemption)
Form 990 filings on record
7, latest 2024
IRS Publication 78
PC (contributions deductible)

Most connected

Longest observed on the filings

≥8years on the filingsBryn Webb MD
≥8years on the filingsJacob Licht
≥8years on the filingsRebecca Maher
≥8years on the filingsSteven Maldonado

Latest return

year to 31 December 2025iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2025. US dollars, as filed.
Total assets
$2.5m
Total liabilities
$105k
Net assets or fund balances
$2.4m
Contributions and grants received
$962k
Program service revenue
$39k
Grants and similar paid out
$228k
Employees
2
Volunteers
111

Filed finances

1 yeariTotals as filed on the IRS Form 990 (revenue and expenses), by tax year.
Tax yearTotal revenueTotal expensesSurplus or deficit
2024$338k$283k$55k

As filed on the IRS Form 990. US dollars.

Grants paid

2 listediFrom Schedule I of the Form 990: grants and assistance to organisations in the United States, largest first (up to 25). Schedule I is filed only by organisations that gave more than $5,000 to any one recipient.
RecipientPurposeAmount
The Board of Regents University of WisconsinFor scientific and/or clinical research on Moebius syndrome$100k
Northwestern UniversityFor scientific and/or clinical research on Moebius syndrome$100k

State registration

2 entitiesiBusiness-entity registers published by US states. These records are matched to this organisation by name and state, not by EIN, and are labelled as likely matches. Street addresses are not shown.
Moebius Syndrome Foundation Inc. likely matchiMatched by exact name and state (and ZIP where shown). State registers do not publish EINs, so this is not a confirmed match. Source: Colorado Secretary of State (CDOS), business entities (data.colorado.gov 4ykn-tg5h). Licence: public domain. Data last fetched 18 October 2026.
State
Colorado
Entity type
nonprofit corporation
Status
Good Standing
Formed
2 February 2025
Registered agent
Jennifer Jill Whitman (city and state not held)

This register does not publish officers or directors.

Moebius Syndrome Foundation likely matchiMatched by exact name and state (and ZIP where shown). State registers do not publish EINs, so this is not a confirmed match. Source: Colorado Secretary of State (CDOS), business entities (data.colorado.gov 4ykn-tg5h). Licence: public domain. Data last fetched 18 October 2026.
State
Colorado
Status
Good Standing
Formed
21 October 2009
Registered agent
Incorp Services, Inc. (city and state not held)

This register does not publish officers or directors.