Myotonic Dystrophy Foundation
Donations deductibleMyotonic Dystrophy Foundation's network
12 people5 organisationsi12 people and 5 organisations on this map.The large node is the subject of this page. Solid lines are what the register itself records (12). Violet dotted lines (5) are likely: the same full name sits on the current board of another organisation in the same register and region. Form 990 filings give names without a person identifier; SEC insider filings carry a CIK. It may be a different person.The board
12 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 in the tables. The network map shows same-name matches as likely links only, never as confirmed.Tenure and departures are observed across annual filings. Observed tenure is a lower bound - a member may have joined before the first year on record. The organisation reported 12 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.| Name | Role as filed | Since | On the board |
|---|---|---|---|
| Jeremy Kelly Chair | Chair | 2019 | 7 yrs |
| Belen Esparis | Director | 2022 | 4 yrs |
| Charles Thornton | Director | 2020 | 6 yrs |
| David Berman | Director | 2018 | 8 yrs |
| David Herbert | Treasurer | 2018 | 8 yrs |
| Elizabeth Florence | Company secretary | 2018 | 8 yrs |
| Haley Martinelli | Director | 2023 | 3 yrs |
| Joel Revill | Director | 2018 | 8 yrs |
| John Fitzpatrick | Director | 2018 | 8 yrs |
| John W Day | Director | 2020 | 6 yrs |
| Martha Montag Brown | Vice-Chair | 2018 | 8 yrs |
| Tom McPeek | Director | 2021 | 5 yrs |
Officers and senior leadership
5 listediNamed in Part VII as officers, key employees or highest-compensated staff - not board members, shown for completeness.| Name | Title as filed | On the filings |
|---|---|---|
| Catherine Beck | Projects Manager | 2023 |
| Kleed Cumming | Comm/Tech Manager | since 2022 |
| Leah Hellerstein | Program Director | 2019 |
| Molly White | CEO | since 2018 |
| Tanya Stevenson | CEO | since 2020 |
Pay and hours
year to 31 December 2024iFrom 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.| Name | Title as filed | Hours a week | Pay from the organisation | Related organisations | Other |
|---|---|---|---|---|---|
| Tanya Stevenson | CEO | 60 | $248k | $9k | |
| Andreas Rohrwasser | Chief Sci. Officer | 40 | $198k | $8k | |
| Kleed Cumming | Comm/Tech Manager | 40 | $132k | $5k | |
| Mindy Buchanan | Dir. of Programs | 40 | $127k | ||
| Jeremy Kelly | Chair | 5 | $0 | ||
| Martha Montag Brown | Vice-Chair | 5 | $0 | ||
| Elizabeth Florence | Secretary | 5 | $0 | ||
| David Herbert | Treasurer | 5 | $0 | ||
| David Berman | Director | 1 | $0 | ||
| John W Day | Director | 1 | $0 | ||
| Charles Thornton | Director | 1 | $0 | ||
| Robert Campagna | Director | 1 | $0 | ||
| Andrew Berglund | Director | 1 | $0 | ||
| TOM McPeek | Director | 1 | $0 | ||
| Belen Esparis | Director | 1 | $0 | ||
| Haley Martinelli | Director | 1 | $0 |
About
- Legal name
- Myotonic Dystrophy Foundation
- EIN
- 205014628
- Address
- 663 13th St Ste 100, Oakland, CA, 94612-1274
- State
- California
- Mission
- To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research. (as filed on the Form 990)
- Activity (NTEE)
- G40 Voluntary health associations and medical disciplines
- IRS classification
- 501(c)03 (tax-exempt under section 501(c)(3) where shown)
- Classified purpose
- Voluntary Health Associations & Medical Disciplines
- Size band
- 7 (IRS master file code)
- Formed
- 2006
- Principal officer
- Tanya Stevenson (as named on the Form 990)
- IRS ruling date
- 1 March 2007
- Status
- Code 01 (unconditional exemption)
- Form 990 filings on record
- 6, latest 2023
- IRS Publication 78
- PC (contributions deductible)
Most connected
Longest observed on the filings
≥8years on the filingsDavid Berman
≥8years on the filingsDavid Herbert
≥8years on the filingsElizabeth Florence
≥8years on the filingsJoel Revill
Latest return
year to 31 December 2024iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2024. US dollars, as filed.- Total assets
- $5.8m
- Total liabilities
- $1.9m
- Net assets or fund balances
- $3.9m
- Contributions and grants received
- $3.6m
- Program service revenue
- $2k
- Grants and similar paid out
- $1m
- Employees
- 14
- Volunteers
- 90
Grants paid
9 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.| Recipient | Purpose | Amount |
|---|---|---|
| University of Utah | $190k | |
| University of Nevada | $145k | |
| University of Florida | $105k | |
| University of Illinois | $105k | |
| Unversity of Albany | $105k | |
| Wake Forest University | $55k | |
| Massachusetts General | $50k | |
| University of Washington | $50k | |
| Virginia Commonwealth Univers | $43k |