Myotonic Dystrophy Foundation Inc
To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.
Myotonic Dystrophy Foundation Inc at a glance
In short: Myotonic Dystrophy Foundation Inc gave $848K across 9 grants in 2024 (avg $94K), top state Utah. Source: 2024 IRS Form 990.
- Annual giving (2024)
- $847,600
- +21.1% vs 2023
- Grants made (2024)
- 9
- +28.6% vs 2023
- Average grant
- $94,178
- -5.8% vs 2023
- Median grant
- $105,000
- Total assets
- $5,826,049
- +6.6% vs 2023
- Primary geography
- Utah (22% of itemized 2024 grant dollars)
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated September 2026.
Who Myotonic Dystrophy Foundation Inc funds
How this funder distributes its grants
Top Recipients
Top 9 recipients in 2024
The largest 2024 recipient was University of Utah ($190K). Together the top 9 received $848K.
Grant Size Distribution
31 grants across all recorded years
The most common grant size was in the $100–250K range: 15 grants of 31 (48%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2024 grant dollars across all 9 itemized grants.
States
Cities
How Myotonic Dystrophy Foundation Inc gives
- Giving grew 50% from 2021 to 2024. 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 2019 to 2024, annual grant giving ranged from $117K (2020) to $1.0M (2022). In 2024 it made 9 grants totaling $848K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of Utah Salt Lake City, UT | Research | $190,000 |
| University of Nevada Las Vegas, NV | Research | $145,000 |
| University of Florida Gainesville, FL | Research | $105,000 |
| University of Illinois Urbana, IL | Research | $105,000 |
| Unversity of Albany Albany, NY | Research | $105,000 |
| Wake Forest University Winston-Salem, NC | — | $55,000 |
| Massachusetts General Boston, MA | Research | $50,000 |
| University of Washington Seattle, WA | Research | $50,000 |
| Virginia Commonwealth Univers Richmond, VA | Research | $42,600 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2024 | $5,826,049 | $3,659,795 | $3,754,033 | $847,600 | 9 | $199,813 |
| 2023 | $5,467,413 | $2,448,480 | $3,791,128 | $700,000 | 7 | $183,627 |
| 2022 | $6,830,491 | $2,774,035 | $2,506,145 | $1,045,000 | 6 | $4,672 |
| 2021 | $5,846,076 | $2,383,618 | $1,490,525 | $563,494 | 6 | $269 |
| 2020 | $4,489,179 | $1,947,806 | $1,124,779 | $117,400 | 3 | $6,329 |
| 2019 | $3,955,407 | $2,271,866 | $2,248,284 | $167,840 | 3 | $16,560 |
About Myotonic Dystrophy Foundation Inc
Based on IRS filings
Myotonic Dystrophy Foundation Inc is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Oakland, CA. IRS filing data is available from 2019 through 2024. As of 2024, the organization holds $5.8M in total assets. In 2024, it awarded 9 grants totaling $848K. Net investment income was $200K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Myotonic Dystrophy Foundation Inc is led by Tanya Stevenson, CEO on every filing since 2020; 4 of 16 officers listed in 2024 are compensated.
Officers on the 2024 filing
Tanya Stevenson
CEO
On filings since 2020
60 hrs/week
$216K (2020) → $248K (2024)
Jeremy Kelly
Chair
Chairman → Chair, 2020
On filings since 2019
5 hrs/week
No compensation reported
Mindy Buchanan
Director of Programs
On filings since 2023
40 hrs/week
$109K (2023) → $127K (2024)
David Berman
Director
On filings since 2019
1 hr/week
No compensation reported
Charles Thornton
Director
On filings since 2020
1 hr/week
No compensation reported
John W. Day
Director
On filings since 2020
1 hr/week
No compensation reported
TOM McPeek
Director
On filings since 2021
1 hr/week
No compensation reported
Belen Esparis
Director
On filings since 2022
1 hr/week
No compensation reported
Haley Martinelli
Director
On filings since 2023
1 hr/week
No compensation reported
Andrew Berglund
Director
New on the 2024 filing
1 hr/week
No compensation reported
Robert Campagna
Director
New on the 2024 filing
1 hr/week
No compensation reported
Kleed Cumming
Committee & Tech Manager
Comms. & Tech Mngr → Committee & Tech Manager, 2022
On filings since 2020
40 hrs/week
$102K (2020) → $132K (2024)
Andreas Rohrwasser
Chief Sci. Officer
New on the 2024 filing
40 hrs/week
$198K (2024)
David Herbert
Treasurer
On filings since 2019
5 hrs/week
No compensation reported
Elizabeth Florence
Secretary
On filings since 2019
5 hrs/week
No compensation reported
Martha Montag Brown
Vice Chair
Vice Chairman → Vice Chair, 2020
On filings since 2019
5 hrs/week
No compensation reported
Former officers (5)
- Former: Joel Revill (2019–2023) — Director
- Former: John Fitzpatrick (2019–2023) — Director
- Former: Catherine Beck (2023) — Projects Manager
- Former: Leah Hellerstein (2019) — Program Director
- Former: Molly White (2019) — CEO
Data from IRS Form 990 filings, 2019–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2024 IRS filing
The highest reported compensation on the 2024 filing was $248K, to Tanya Stevenson (CEO). 4 officers or directors reported compensation on that filing.
Frequently asked questions about Myotonic Dystrophy Foundation Inc
How much does Myotonic Dystrophy Foundation Inc give each year?
Myotonic Dystrophy Foundation Inc gave $848K across 9 grants in 2024, according to its 2024 IRS Form 990. In 2023 it gave $700K across 7 grants.
What is Myotonic Dystrophy Foundation Inc's typical grant size?
Myotonic Dystrophy Foundation Inc's median grant in 2024 was $105,000, and its average grant was $94,178, across 9 grants on its 2024 IRS Form 990.
Where does Myotonic Dystrophy Foundation Inc give grants?
Myotonic Dystrophy Foundation Inc's top state is Utah, with 22% of the grant dollars itemized on its 2024 IRS Form 990. The next largest states were Nevada (17%) and Florida (12%).
Does Myotonic Dystrophy Foundation Inc give general operating support?
Not in 2024: none of the 8 grants with a stated purpose on Myotonic Dystrophy Foundation Inc's 2024 IRS Form 990 were described as general or operating support. Recurring purposes include "Research" (8 grants).
Who are Myotonic Dystrophy Foundation Inc's largest grantees?
Myotonic Dystrophy Foundation Inc's largest 2024 grantees include University of Utah ($190,000), University of Nevada ($145,000) and University of Florida ($105,000), according to its 2024 IRS Form 990. Together they received 52% of its itemized 2024 grant dollars.
How large is Myotonic Dystrophy Foundation Inc?
Myotonic Dystrophy Foundation Inc reported $5.8M in total assets on its 2024 IRS Form 990. Its revenue that year was $3.7M.
What is Myotonic Dystrophy Foundation Inc?
Myotonic Dystrophy Foundation Inc is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Oakland, CA. It holds $5.8M in total assets as of 2024.
What is Myotonic Dystrophy Foundation Inc's EIN?
Myotonic Dystrophy Foundation Inc's EIN (Employer Identification Number) is 20-5014628. IRS Form 990 filing data is available on this page for 2019–2024.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(7)
When this profile's IRS filing data changed on Grantable
- Added Form 990 for fiscal year 2019 (received by the IRS July 2, 2020)
- Updated Form 990 for fiscal year 2020 (received by the IRS August 2, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS September 16, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS November 15, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS November 14, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS November 4, 2025)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work Myotonic Dystrophy Foundation Inc funds
Diseases, Disorders & Medical Disciplines Open opportunities, soonest deadline first.
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