Program areas at MDF
Education - 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.
Advocacy - 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.
Research - We raise additional funds in the private sector in order to accelerate further understanding of the disease through research. MDF supports both clinical and scientific research with a goal of finding a treatment and eventually a cure for this chronic, degenerative disease.
Who funds Myotonic Dystrophy Foundation (MDF)
Grants from foundations and other nonprofits
Personnel at MDF
| Name | Title | Compensation | Date of data |
|---|
| Tanya Stevenson | Chief Executive Officer | $240,871 | 2024-11-14 |
| Andy Rohrwasser | Chief Scientific Officer | | 2024-11-11 |
| Kleed Cumming | Director of Communications and Technology | $131,861 | 2024-11-11 |
| Andy Serves | Laboratory Director | | 2024-11-11 |
| Lucie Joined | Senior Manager of Community Engagement | | 2024-11-11 |
| ...and 5 more key personnel |
Financials for MDF
| Revenues | FYE 12/2023 | FYE 12/2022 | % Change |
|---|
| Total grants, contributions, etc. | $2,324,783 | $2,774,635 | -16.2% |
| Program services | $82,999 | $66,768 | 24.3% |
| Investment income and dividends | $119,090 | $4,672 | 2449% |
| Tax-exempt bond proceeds | $0 | $0 | - |
| Royalty revenue | $0 | $0 | - |
| Net rental income | $0 | $0 | - |
| Net gain from sale of non-inventory assets | $64,537 | $0 | 999% |
| Net income from fundraising events | $-142,929 | $-98,290 | -45.4% |
| Net income from gaming activities | $0 | $0 | - |
| Net income from sales of inventory | $0 | $0 | - |
| Miscellaneous revenues | $0 | $26,250 | -100% |
| Total revenues | $2,448,480 | $2,774,035 | -11.7% |
Organizations like MDF
| Organization | Type | Location | Revenue |
|---|
| The Als Association - Greater New York Chapter | 501(c)(3) | New York, NY | $4,847,061 |
| Tourette Association of America | 501(c)(3) | Bayside, NY | $5,048,195 |
| Dravet Syndrome Foundation | 501(c)(3) | Cherry Hill, NJ | $3,257,096 |
| The Brian Grant Foundation | 501(c)(3) | Portland, OR | $621,011 |
| American Association of Kidney Patients | 501(c)(3) | Tampa, FL | $2,678,191 |
| The Als Association - Rhode Island Chapter | 501(c)(3) | Warwick, RI | $844,803 |
| The Cure Starts Now | 501(c)(3) | Cincinnati, OH | $5,080,693 |
| Parkinson Association of the Rockies | 501(c)(3) | Denver, CO | $1,468,463 |
| Jett Foundation | 501(c)(3) | Plymouth, MA | $3,537,013 |
| The ALS Association - ALS Association Golden West Chapter | 501(c)(3) | Woodland Hills, CA | $10,245,280 |
Data update history
November 11, 2024
Updated personnel
Identified 2 new personnel
June 16, 2024
Updated personnel
Identified 6 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Political advocacyConducts researchFundraising eventsCommunity engagement / volunteeringGala fundraisersTax deductible donationsAccepts online donations
General information
- Address
- 663 Thirteenth St Suite 100
- Oakland, CA 94612
- Metro area
- San Francisco-Oakland-Berkeley, CA
- County
- Alameda County, CA
- Website URL
- myotonic.org/Â
- Phone
- (866) 968-6642
- Facebook page
- CareAndACureMDFÂ
- Twitter profile
- @careandacuremdfÂ
IRS details
- EIN
- 20-5014628
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 2006
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- G50: Nerve, Muscle, and Bone Diseases
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
California AB-488 details
- AB 488 status
- May Operate or Solicit for Charitable Purposes
- Charity Registration status
- Current - In Process
- FTB status revoked
- Not revoked
- AG Registration Number
- 133551
- FTB Entity ID
- 2880683
- AB 488 data last updated ("as-of") date
- 2025-01-15
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