Civic Intelligence

Myotonic Dystrophy Foundation Inc

EIN 20-5014628 • 501(c)3 • Oakland, CA

Profile

To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.

663 Thirteenth Street Suite 100Oakland, CA 94612

www.myotonic.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

70th percentile

0.33x

Higher debt load relative to assets than 70% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Liabilities / Revenue

75th percentile

0.52x

Higher debt load relative to revenue than 75% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Net Margin

30th percentile

-2.6%

Higher net margin than 30% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Top Officer Pay

Score unavailable

No value available

No filing with officer rows is available for this organization yet.

Asset Growth

55th percentile

6.6%

Faster asset growth than 55% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Annualized from 2023 to 2024

Revenue Growth

86th percentile

49%

Faster revenue growth than 86% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets70th percentile

Assets

Up

$5,826,049

Up $358,636 (+6.6%) from 2023

Liabilities

Up

$1,917,906

Up $452,425 (+31%) from 2023

Net Assets

Down

$3,908,143

Down $93,789 (-2.3%) from 2023

Operations
Liabilities / Revenue75th percentileNet Margin30th percentile

Revenue

Up

$3,659,795

Up $1,211,315 (+49%) from 2023

Expenses

Down

$3,754,033

Down $37,095 (-1.0%) from 2023

Net Income

Up

-$94,238

Up $1,248,410 (+93%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth55th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$8.0M$6.0M$4.0M$2.0M$0Assets 2011: $1,890,239Liabilities 2011: $153,769Net Assets 2011: $1,736,4702011Assets 2012: $1,699,136Liabilities 2012: $537,530Net Assets 2012: $1,161,6062012Assets 2013: $2,085,873Liabilities 2013: $427,442Net Assets 2013: $1,658,4312013Assets 2014: $1,642,464Liabilities 2014: $344,645Net Assets 2014: $1,297,8192014Assets 2015: $2,299,688Liabilities 2015: $212,483Net Assets 2015: $2,087,2052015Assets 2016: $2,063,066Liabilities 2016: $142,312Net Assets 2016: $1,920,7542016Assets 2017: $3,288,895Liabilities 2017: $129,242Net Assets 2017: $3,159,6532017Assets 2018: $3,794,207Liabilities 2018: $471,821Net Assets 2018: $3,322,3862018Assets 2019: $3,955,407Liabilities 2019: $609,043Net Assets 2019: $3,346,3642019Assets 2020: $4,489,179Liabilities 2020: $322,658Net Assets 2020: $4,166,5212020Assets 2021: $5,846,076Liabilities 2021: $786,638Net Assets 2021: $5,059,4382021Assets 2022: $6,830,491Liabilities 2022: $1,488,211Net Assets 2022: $5,342,2802022Assets 2023: $5,467,413Liabilities 2023: $1,465,481Net Assets 2023: $4,001,9322023Assets 2024: $5,826,049Liabilities 2024: $1,917,906Net Assets 2024: $3,908,1432024

Highlighted filing

2024

Assets$5,826,049
Liabilities$1,917,906
Net Assets$3,908,143
Open 2024 Filing

Operations Trend

Revenue Growth86th percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$4.0M$2.0M$0-$2.0MExpenses 2011: $736,1602011Expenses 2012: $1,312,3652012Revenue 2013: $1,482,366Expenses 2013: $985,541Net Income 2013: $496,8252013Revenue 2014: $727,525Expenses 2014: $1,088,137Net Income 2014: -$360,6122014Revenue 2015: $2,139,511Expenses 2015: $1,350,125Net Income 2015: $789,3862015Revenue 2016: $1,805,876Expenses 2016: $1,972,327Net Income 2016: -$166,4512016Revenue 2017: $3,237,856Expenses 2017: $1,998,957Net Income 2017: $1,238,8992017Revenue 2018: $2,183,628Expenses 2018: $2,021,676Net Income 2018: $161,9522018Revenue 2019: $2,271,866Expenses 2019: $2,248,284Net Income 2019: $23,5822019Revenue 2020: $1,947,806Expenses 2020: $1,124,779Net Income 2020: $823,0272020Revenue 2021: $2,383,618Expenses 2021: $1,490,525Net Income 2021: $893,0932021Revenue 2022: $2,774,035Expenses 2022: $2,506,145Net Income 2022: $267,8902022Revenue 2023: $2,448,480Expenses 2023: $3,791,128Net Income 2023: -$1,342,6482023Revenue 2024: $3,659,795Expenses 2024: $3,754,033Net Income 2024: -$94,2382024

Highlighted filing

2024

Revenue$3,659,795
Expenses$3,754,033
Net Income-$94,238
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$5,826,049
Liabilities
$1,917,906
Net assets
$3,908,143
Revenue
$3,659,795
Expenses
$3,754,033
Net income
-$94,238
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$5.83$1.92$3.91$3.66$3.75$0.09
2023Detailed filing. Detailed filing data is available for this year.$5.47$1.47$4.00$2.45$3.79$1.34
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$6.83$1.49$5.34$2.77$2.51$0.27
2021Detailed filing. Detailed filing data is available for this year.$5.85$0.79$5.06$2.38$1.49$0.89
2020Detailed filing. Detailed filing data is available for this year.$4.49$0.32$4.17$1.95$1.12$0.82
2019Detailed filing. Detailed filing data is available for this year.$3.96$0.61$3.35$2.27$2.25$0.02
2018Detailed filing. Detailed filing data is available for this year.$3.79$0.47$3.32$2.18$2.02$0.16
2017Detailed filing. Detailed filing data is available for this year.$3.29$0.13$3.16$3.24$2.00$1.24
2016Detailed filing. Detailed filing data is available for this year.$2.06$0.14$1.92$1.81$1.97$0.17
2015Detailed filing. Detailed filing data is available for this year.$2.30$0.21$2.09$2.14$1.35$0.79
2014Detailed filing. Detailed filing data is available for this year.$1.64$0.34$1.30$0.73$1.09$0.36
2013Detailed filing. Detailed filing data is available for this year.$2.09$0.43$1.66$1.48$0.99$0.50
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.70$0.54$1.16$1.31
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.89$0.15$1.74$0.74
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Nov 4, 2025
Return Version
2024v5.2
Gross Receipts
$3,923,920
Mission and Program Overview

Mission

To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$4,755,236$5,161,089▲ $405,853
Cash and Non-Interest-Bearing Accounts$391,111$441,253▲ $50,142
Prepaid Expenses and Deferred Charges$14,073$179,585▲ $165,512
Investments in Publicly Traded Securities$46,548$0▼ $46,548
Pledges and Grants Receivable$200,990$9,623▼ $191,367
Accounts Receivable-$0-
Other Notes and Loans Receivable, Net-$0-
Receivable From Disqualified Prsn-$0-
Receivables From Officers Etc-$0-
Investments Other Securities-$0-
Investments Program Related-$0-
Land, Buildings, and Equipment, Net-$0-
Intangible Assets-$0-
Inventories for Sale or Use-$0-
Total Assets$5,467,413$5,826,049▲ $358,636
Other Assets Total$59,455$34,499▼ $24,956
Liabilities
Grants Payable$1,300,000$1,671,999▲ $371,999
Accounts Payable and Accrued Expenses$104,573$138,292▲ $33,719
Deferred Revenue-$72,058-
Other Liabilities$60,908$35,557▼ $25,351
Total Liabilities$1,465,481$1,917,906▲ $452,425
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$3,939,773$3,908,143▼ $31,630
Net Assets With Donor Restrictions$62,159--
Total Net Assets Fund Balance$4,001,932$3,908,143▼ $93,789
Total Liabilities and Net Assets / Fund Balance$5,467,413$5,826,049▲ $358,636
Compensation and Service Providers
Top Officer PayScore unavailable

Employees

NameTitleFull / Part TimeBaseOtherTotal
Tanya StevensonCEOFT$247,799$9,258$257,057
Andreas RohrwasserChief Sci. OfficerFT$197,755$7,800$205,555
Kleed CummingComm/tech ManagerFT$131,723$4,944$136,667
Mindy BuchananDirector of ProgramsFT$127,061-$127,061

Board Members and Trustees

NameTitle
Jeremy KellyChair
Martha Montag BrownVice-chair
Andrew BerglundDirector
Belen EsparisDirector
Charles ThorntonDirector
David BermanDirector
Haley MartinelliDirector
John W DayDirector
Robert CampagnaDirector
TOM McPeekDirector
Elizabeth FlorenceSecretary
David HerbertTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$3,637,697
Program Service Revenue
$1,624
Investment Income
$199,813
Other Revenue
$-179,339
All Other Contributions
$1,312,824
Change in Net Assets
$-94,238

Audited Revenue Reconciliation

Revenue per Audited Statements
$3,659,795
Revenue Not Reported on Form 990
$179,789
Total Revenue per Audited Statements
$3,839,584
Total Revenue per Form 990
$3,659,795
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$1,572,229
Other Expenses$1,173,758
Grants and Similar Amounts Paid$1,008,046
Total Fundraising Expense$256,324
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$921,693$48,924$165,518$1,136,135
Grants to Domestic Orgs$849,721--$849,721
Conferences and Meetings$509,846$28,162$13,455$551,463
Fees for Services Other$236,428$65,115$2,297$303,840
Current Officers, Directors, Trustees, and Key Employees$208,539$11,069$37,449$257,057
Foreign Grants$158,325--$158,325
Payroll Taxes$81,381$4,320$14,615$100,316
Other Employee Benefits$63,863$3,390$11,468$78,721
Occupancy$29,394$203$3,985$33,582
Information Technology$21,246$4,858$1,720$27,824
Fees for Services Accounting$13,195$3,017$1,068$17,280
Insurance$3,314$580$656$4,550
Other Expenses$4,428$29$215$244
Total Functional Expenses$3,293,629$204,080$256,324$3,754,033

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$3,933,372
Expenses per Audited Statements$3,754,033
Total Expenses per Form 990$3,754,033
Expenses Not Reported on Form 990$179,339
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of UtahSalt Lake City, UT501(c)(3)Research$190,000
University of NevadaLas Vegas, NV501(c)(3)Research$145,000
University of FloridaGainesville, FL501(c)(3)Research$105,000
University of IllinoisUrbana, IL501(c)(3)Research$105,000
Unversity of AlbanyAlbany, NY501(c)(3)Research$105,000
Wake Forest UniversityWinstonsalem, NC501(c)(3)-$55,000
Massachusetts GeneralBoston, MA501(c)(3)Research$50,000
University of WashingtonSeattle, WA501(c)(3)Research$50,000
Virginia Commonwealth UniversRichmond, VA501(c)(3)Research$42,600

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$179,339
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Gala$1,841,488-$179,339-
Total Events$1,841,488-$179,339$-179,339
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Receivables from Disqualified Persons-$0-
Receivables from Officers, Directors, Trustees, and Key Employees-$0-
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Operating Lease Liability$35,557
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
No
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
Yes
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section B, Line 11B

“The board is provided a copy of the tax return for review prior to being finalized.”

Form 990, Part VI, Section B, Line 12C

“The executive committee monitors and enforces compliance with the policy. The executive committee has a forum to raise and address any potential conflicts of interest and/or answer any questions. Mdf makes sure all decisions/actions are clear of conflicts during regularly scheduled meetings.”

Form 990, Part VI, Section B, Line 15A

“An independent employment search firm is used on a consulting basis to perform a market analysis of salaries and other compensation.following that analysis, the ceo salary is reviewed and approved by both the executive committee and the full board.”

Form 990, Part VI, Section C, Line 19

“AVAILABLE UPON REQUEST.”

Filing and Contact Details

Filer

Filer Name
Myotonic Dystrophy Foundation Inc
EIN
20-5014628
Phone
4158007745
Address
663 THIRTEENTH STREET SUITE 100, OAKLAND, CA 94612

Signing Officer

Name
Tanya Stevenson
Title
CEO
Signed
2025-11-04
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Tanya Stevenson
Formed
2006
Legal Domicile
CA
Voting Board Members
12
Independent Board Members
12
Employees
14
Volunteers
90

Preparer

Firm
Propp Christensen Caniglia Llp
Address
9261 Sierra College Boulevard, Roseville, CA 95661
Preparer
K Jeffrey De Lyser CPA
Phone
9167512900
Supplemental Narrative

Financial Statement Notes

Part XI, Line 2D: Other revenue amounts included in F/S but not included on form 990

“Special events expenses $179339”

Part XII, Line 2D: Other expenses and losses per audited F/S

“Special events expenses $179339”

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This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/ProgSrvcAccomActy2Grp/Desc0Education - We strive not only to help affected individuals, their families and medical professionals understand this disorder, but also to raise awareness about the disease in the general population. MDF supports and helps organize conferences for affected families and medical professionals.
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IRS990/ProgSrvcAccomActy3Grp/Desc0Advocacy - In collaboration with other organizations, we are establishing and perpetuating local and regional support groups to offer emotional support and help to educate families about this disease. In addition to providing information about available services, we advocate for increased funding for myotonic dystrophy research and patient support.
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